Fall 2015

My head hurts.  There is no ache that doesn’t cause fear.  Every backache, headache, sinus sniffle is a tumor.  Every limb that falls asleep.  I do not know if you outgrow it, but I haven’t yet. 
 

When I first got back from the hospital after the brain surgery, I kept asking Jim can you tell a difference in me.  What a question for Jim to field.  From me and I’m sure from everyone else, too.  I’m still trying to figure out the answer.  I think I’m good.  I think I’m me.  But how would I know?

I often think of that period of confusion.   All the things I was up to.  Terrible headaches.  Piercing pain.  (Diagnosed as TJM.  Do I really seem like I complain that quickly?).  Lots of nausea and throwing up from the pain.  One of the days, I left work early to take Ian to the doctor.  I remember having trouble navigating to the doctor’s office.  I had trouble getting him into and out of the car.  I couldn’t really focus well.  I wondered if it was left-over anesthesia.  Now, when I have extra time and find myself just sitting, I wonder, am I having trouble focusing? 

The past two years exhaust me.  And the year before that was a move, a renovation and a new baby.  So, maybe the past three years exhaust me. 

How am I?  I am grateful for what I have.  I wonder a lot about the future, in a not-specifically about cancer, but still about cancer sortof way.   I feel better, good.  I like my inch of hair.  I just also have a little sadness, too. 

My gratitude makes it easier when Ian shouts up in the middle of the night: “wet, mommy, wet daddy.”  I am happy to collect him, change him and curl into his toddler bed with him. 

 

See, we are good; we are fine.  November knocks, but December 2015 sings with promise. 

Atta, atta indeed.

When I met with my oncologist in December 2013, I asked whether I'd see December 2014. She promised me December 2014 but wouldn't promise me anything after that. I was thirty-nine with a three year old and a baby two days shy of five months and advanced stage breast cancer. The thought of all I might miss shattered me.

The days that followed were so difficult it still catches my breath.  I am actually not sure how we pushed through. God was it hard and God am I tired.  But it seems like we are on the other side of something. Not the totally horrifying statistics, but maybe the momentum.  Last week both of my tests were clear.  This respite will only last three months, but three months takes me to November.  December 2015 is in my sights.

We walk Miles to his first day of kindergarten tomorrow morning.  Literally nothing could make me prouder.

Atta and ah damn

I lost a cancer friend this week.

Diana lived in Mount Pleasant and walked with Jennifer (Seketta's cousin).  Over the years, their walks and our front porches, we hi, helloed.  When Diana learned of my diagnosis, she started leaving cards, flowers, notes, words of encouragement on our front porch.

In December, she was diagnosed with esophageal cancer. I learned of it when I bumped into her at an appointment with Hans in February.  She looked fabulous in her asymmetrical wig, but I was crushed to see her there.  Diana recognized me first (us in two wigs, looking unlike we had weeks before) and I heard her difficult story and met her husband, Doug.

A few weeks ago, I saw Diana and Doug walking up Park.   I ran out to catch them and say hello. Diana was serene about her future. Maybe more treatment, maybe six months.

I heard the news of her death Wednesday on my way to the results of my brain MRI.  It would be impossible to overstate how much that has rattled me.  Is that how it happens?  It's going fine and then it isn't?  You are walking the neighborhood and fighting cancer and then you are not?

My brain MRI was clear but the atta girl seemed a little less significant.   Or more significant. I don't know which.  I just wanted to get out of the appointment and away from it all.

I took a card over to Doug, met his brother and talked for a bit. Cried. Shook my head in disbelief. Promised to check in after everyone else stopped coming by.

I've been in a bit of a fog since.

I did make one bold move this week. #annielenox. Jim hates it and he is not all wrong. It isn't good looking.  But it's been ages since I've been cute. And it's not brown, so I'm happy. And thank you, Hans, for that.

May God bless Diana and keep her close and comfort her family in their sorrow.

Hoping for an "atta girl"

It's odd. Im forty one (when did that happen?) and I found myself wondering today when I would be the person I always thought I'd be. You know, put together, wearing cosmetics not all available at Target, organized, groceries in the house, thank yous written, kids with haircuts, thinking of something creative to cook for dinner, and spare birthday gifts stashed in some organized closet. Do I ever get to be that person?  Would I even like me as that person?  I envy it in others for sure.  See, it is impossible to teeter on the precipice too long without drawing back into your natural angst, tendencies and drama. I'm not cherishing the sunshine and ignoring the traffic anymore. The perspective euphoria has lifted.

And I do actually realize that you can't jinx yourself into health issues, but I swear two days before my last appointment I was noticing how great I felt. Fucking, eh.  At my Thursday am appointment, my surgeon confirmed I needed surgery and offered to try to book me for later that day or the next. Umm, I have a job, two kids at home and a husband traveling for business.  I'm going to need a minute.

So, surgery was last week.  I was told not to call it a surgical tweak. Some of my very radiated skin wasn't cooperating. So we cut it out. My surgeon was on his way home after forty-five minutes.  My convalescence has been slightly slower. Today is a week and I still have a drain, some pain and trouble lifting not so little Ian.  Fighting form tbd.

Tests scattered through the remainder of the month.  A bone, a CT, an MRI. Results thereafter. Best case, atta girl, come back in three months. Worst case, worse.

Lend me your strength and keep me in mind. Doubly so, as my gentle, curious and kind baby Miles  heads to kindergarten in a few weeks.  I'm a proud, teary mess already.

I'll keep you posted.

I must be feeling better

Vertigo is for real. And it's like being pregnant.  Once you are diagnosed with vertigo, it's everywhere, everyone's had it and somehow you'd never noticed. Anyway, the nausea and dizziness lasted and lasted. The first day I recall feeling nausea was April 20. It was June before I could sit up in the morning without thinking about it. That is a long time not to turn your head when someone calls your name. Or says "Momma" twelve times before breakfast.

So, I have obviously forgotten some of my own hardship, because today, three surgeries, two series of radiation treatments and sixteen weeks of chemo later, the veritgo sticks in my mind as the worst.  It wasn't - the chemo was awful, but at least they gave me medicine for the nausea rather than exercises!

So, April, May and the start of June were pretty rough for me. My anxiety and uncertainty were also fairly substantial challenges.

With a little coaxing and a little rebalancing, I am finding my footing.  I am sleeping through two and five am, frequent companions over the past few months.  I am eating something closer to a few small meals a day. I can think about movement and exercise without doubling over.

I consolidated my next set of tests into the month of August.  The goal was to consolidate the worry. It didn't work.  I was never much of a worrier about aches, but it seems I've become a hypochondriac.

Everyday, I am legitimately convinced the itchy eye is a sign of a brain tumor, my lower back ache is a liver or kidney tumor or my ankle ache is a tumor.  I raise these ailments with Jim, a new one almost everyday. He was never high in empathy and he is not a big fan of these new concerns.

And I was writing this blog to say, I am fine. I am working. I am playing with the kids. I am getting out of the house with Jim.  Over the past few weeks, it's been a comedy show, concert, movie, musical, dinner with friends.  So, I must be fine. Active, tired, challenged, engaged, not thinking about dying everyday or even every other day.

I must be feeling better.  I went to the dentist today. Who does that with vertigo?

Fourth of July at home in Washington. The following week in Chicago. Then a business trip. Then Ian turns two. Can you believe it?  Two. But still whispers the sweetest "Momma," you'll ever hear.

Learning not to panic

After two weeks, I called about the fatigue and nausea.

That was Friday, May 1. That was probably a tactical error on my part. Calling on a Friday. Probably edema (swelling in the brain). Option 1 jump on a steroid. Option 2 move up the brain MRI appointment and see what was happening in there. Obviously, I pick the no steroid option. Appointment schedule for Sunday morning. Try to keep calm. Try not to get ahead of ourselves. Try to get someone to watch the kids without telling them why. Smile. Just a spring weekend with possible brain edema and definite nausea.

On Monday, I had a message that the MRI was clear by 7 in the morning (awesome patient care). So what's the deal with the nausea. Tests are clear so I go into work and get busy. Tuesday is the same.

Wednesday I wake up vomiting and dizzy.  I update the various doctors. The new symptoms concern them.  There was an extended discussion over the next two days about whether I needed to go directly to the ER or see my neurosurgeon on Friday morning. I believe I received a heathy dose of litigation risk management rather than thoughtful managed care.

In the middle of this, I had to decide whether I was well enough to travel to Austin for a dear friend's wedding. Over the past eighteen months, I've had a lot of grief for my boys and my family, but for whatever reason, I have not focused on my personal loss - fitness, travel, my career. Canceling the trip sucked. Definitely one of my shittiest personal losses of this disease of losses.

Friday I had a referral to an ENT specialist for possible benign positional vertigo.  Just something regular everyday folks get. I had to dose and medicate myself on my various supplies to make it through the weekend, but today, I got the confirmation. No new cancer. No swelling. No tumors.  A little vertigo. No pill needed. Do some head exercises. Symptoms will lessen. No follow up required. Jim and I hardly knew what we were supposed to do. The answer was leave the appointment. We forgot it could be so easy.

So Mother's Day was squashed in there between the neurosurgeon and the ENT fellow. The boys delivered a beautiful day. Miles, predictably, wanted to know when Father's Day was and what we would do to celebrate Jim.  If I didn't see him playing basketball and hockey around the clock, I'd accuse him of bribing these boys.  But they just adore him.  Even on Mother's Day they don't check their loyalty.

I spent the day a little addled. Emotions. Nausea medication. Champagne. But also full up on gratitude. Gratitude for Jim's endurance. That man has had a tough year (a year ago we weren't even done with chemo). Gratitude for our families' love, spiritual support and unflagging confidence.
Gratitude for our rich community of friends. And of course, my juicy, sassy, demanding, exacting boys. Where did they get that nerve?

41 is not mid-forties

I've never been comfortable being the center of attention. I'd just as well stand on the side and chat about what's happening over there in the spotlight. Okay, maybe, some not mean spirited gossiping from the side. But definitely the side.

So that combined with all my cancer-driven mortality angst and the natural reflections that come with a birthday ... I don't even know how to describe it... make for an intense couple of days.

Plus I have a right ankle that aches. I have nausea. I have fatigue. Signs of my age. Or signs of the crazy year. Or signs of progression. Hard to know. Especially, if you are like me and disinclined to ask.

Happy Birthday. I smile, say thank you, change the subject, count how many days in a row of pain or nausea or fatigue (hundreds) and wonder whether to check in with the doctors.

But this is all me and my crazy.  My birthday was lovely. Beautiful, funny, ridiculous cards. Lots of Caps shout-outs and a game seven win. A visit from New Hampshire. So many texts and calls and checkins from friends. Fruit baskets, banana bread, little bouquets from the garden, little gifties dropped by the front door, cookies made by the boys, brunch with family, dinner and movie date with Jim.

Ian whispers the sweetest Happy Birthday, Momma. Miles pouts and refuses to yield his birthday celebration to mine, telling his brother, Happy Birthday, Miles. Everyone gobbles up dessert. Jim grapples with the unvarnished family birthday experience - early, mediocre family dinner, homemade desserts, kid cards, bad family photos, crying and whining galore. What's not to love?  I can't wait for sticky-icky, Mother's Day breakfast in bed....

Having cancer helps you remember what matters. Not was dinner on time, delicious, orderly, pleasant, without a discussion of poop, but was there dinner and did you make time to enjoy it?  It seems that's what makes the memories.

This week has been hard but you gave me a handful of small moments, subtle kindnesses, and sly, shared smiles that helped me enjoy it.

Only two days in, but so far the best thing about 41 is that it is cancer-free. Assuming my ankle, nausea and fatigue are nothing of consequence, I plan to spend the next few weeks before the next cancer check with my family, at work some, exercising and thinking about what I want my next year to look like.

Some have inquired about the hair.  Nothing to report except I still prefer bald to brown and as the result of some fluke of radiation physics, I'm a dead ringer from Marcin Gortat. Lucky girl.

Pace. Fidget. Try not to snap.

Ironically, and I believe this is the correct use of ironically, late stage cancer has given me the gift of time.  I have slower days. I have mornings with my kids. I pick up Miles from school more often. I cook dinner on occasion.  Not well.  And I still much prefer to be cooked for, but I knock around in the kitchen some.  Tonight, I grilled tofu and vegetables. Jim cleaned the kitchen and ordered in.

Some of the slower days are harder. Today, I found myself sitting on my back porch, watching the rain, biting my nails and actively not thinking about anything.  Jim and I went for a walk this morning. He explained he wasn't talking to avoid upsetting me.  Yes, I nodded.  There is nothing to say.  Scans yesterday.  Results later today. Pace. Fidget. Try not to snap.

I was always a little superstitious.  Working in sports cemented it. In 2000, when I sat for the bar in the fine Commonwealth of Virginia, all applicants were required to take the examination in suits (no pants for women!).  I snuck in a little of my marginal defiance to boost my confidence. Under my navy Ann Taylor suit, I wore a gift from a friend - a sparkly superman T-shirt. Look at that. I passed.

A few weeks after the brain surgery, a friend sent me a super-Kelly t-shirt to help kick cancer's ass. I bet Jim, who spent the day with me, doesn't even know I wore it today.  Look at that. Two for two.

Tests were substantially clear. I say substantially because they always say something to the effect of "we aren't really worried about your ankle."  Why are you talking about my ankle then?

After the news, Jim asked how I felt.  I feel emotionally exhausted without any resolution. It's hard to adjust to our reality of wait and see is the best news we can get. It doesn't feel bad, but it sure doesn't feel good either.

This cold, hard day ended with two moments of light. First, I bumped into a neighbor who has been so supportive during my journey.  She had recently been diagnosed and was battling cancer. What a tenacious beast cancer is. But I love a friend in the fight and look forward to helping her on her path.

Second, what could be more precious?  After putting Ian back to bed his crib twice, I relented and rocked him to sleep.  The weight of his body when I pulled him into my lap.  His sweaty, chubby arms thrown around me. His little pant on my neck. His sweet smell. Me savoring, knowing there was nowhere we'd rather be.  God, what a gift.

Four weeks later

I continue to appreciate, rely on and draw strength from your support. I am quiet because ... I am quiet these days.

I remember last spring.  Everyone outside, enjoying life. While I trudged back and forth to chemo. Before surgery. Before radiation. What a hell of a year I've had.

This spring is better than last.

We took a trip to Puerto Rico last week.  We had time together.  We played. Relaxed. Laughed some.

Miles' fifth birthday was so joyful.  So hard. Just impossible to think about not being here for six.  Could my boys not know my mannerisms?  Not hear me and see me in their own everyday actions. It can still be so staggeringly hard.

Physically, I feel good. Rested after radiation. Clear. Strong.

Got my footing and this week we restart the game.  Is it here?  Is it there?  Can I relax for a month?  Two?  Am I back into the fray?

The unreal is my real.

The wait and see

I keep coming back to my roommate in the ICU. Remember him?  (Yes, a him). He was brought into my room the same night I came out of surgery. He had surgery the same day. It sounded like - from the nurses' discussion of which I heard too much because I wasn't as medicated as everyone else in the ICU- was supposed to be a smaller surgery. He ended up having part of his tongue and jaw removed. A big patch of leg skin sewn across one cheek.  He could not speak as a result of the surgery, in substantial pain, and struggling to breathe through his new tracheotomy.  So, that was a horrible situation.  For everyone.

I keep remembering him and wondering, is that me next?  What if the cancer is in my jaw?  What if I need a skin and bone graft?  What if my boys have that ahead of them - some different, thinning, ailing, failing version of me. I am pretty reduced these days, but what if I am reduced to an even smaller remnant of my former self?  And my boys have to bear witness and grow afraid of their mom.   So that haunts me.

I brought my mask home today. Well, let me step back. I finished brain radiation today. And I knew lots of folks would be happy about it. Me, I started weeping about it the night before. To me, it is only bitter. Like ending chemo, it is this eery awful quiet.  Everyone says... live, love, cherish, savor, travel, laugh... I say wait, watch and listen. Is this it? Is that it?

And yet after my last treatment I wept with pride. For doing it. For making it through.  For managing the side effects. For keeping everything else under control. And then I wept for my personal loss.  That my pride stemmed from surviving brain radiation rather than some other accomplishment. At forty, my Dad started running marathons. At forty, I've had two rounds of radiation.

Back to the mask, I had seen some artwork made from these masks and it struck me as such a sign of strength and beauty through hardship. After my good cry, I took a picture of myself in the mask.  Dehumanizing and sickening.  I considered throwing it out of the car window on the way home. It seemed like it might have been liberating. Instead I brought it home. Like my hair from last year, it just seems like it's an important mile-marker in my journey.  So, it stays for now.

Water-logged and weary

I was wrong. I prefer my bald head to short brown hair. For me, the brown hair was just further insult to my loss of sense of self. I'll take the bald. Even if it screams cancer, that's fine. I have cancer.  Or had it. Unclear which.

I had an interesting side effect week. Lots of nausea. Headaches again. Fatigue. And new to me, big, full body shudders.  And all the questions that go along with that: seizures? strokes? Bilateral effects? Fevers? Chills? Neurological effects? Not sure.

The fatigue is funny. It isn't a "gosh, I'm tired and need to sleep."  It's closer to the engine just shuts off. Sort of like an electric car at a stop sign. Which is inconvenient when it's your mind that shuts off.

I'm down to one treatment. Even for a superstitious girl, I'm essentially done. Though I do tend to trip near the radiation finish line.

My emotional state is best likened to water clogged ears. I can still hear what you are saying - just not that well. I'm slightly dislocated from the scene. I smile and laugh at the jokes one beat late.  I am road weary and it shows.

The universe provides and so do you. Ice cream. Chocolates.  Chanel.  Flowers and flowers. Cards and cards. Fruit. Brownies. Cookies. Meals. Grocery gift cards. School pick-ups. School research. Prayers. Concern. Support. Strength. Thank you.

The insults continue

Side effects swooped in last week and it was a rough one. Fatigue like crazy. Nausea like morning sickness all day everyday. Tuesday my scalp started itching. Shit, shit, shit. Thursday, hair loss like I'm going through chemo.

It's interesting. In the crisis of my life, I still get distracted by minutiae. I am undergoing daily radiation treatment for a brain tumor. Literally inconceivable to me fifteen months ago. Mostly inconceivable even two months ago. And still the hair loss inflicts this crippling emotional blow. I just cannot believe that one year later I'm back in this same shit circumstance. I mean, I don't love short brown hair, but it's a whole lot better than no hair.

So, I'm not great company. Not really socializing. Pretty low energy and humor. Trying to figure out what to do about these tufts of hair. If I have to talk to Miles again.  Miles, who the other day asked, why I had doctors appointments every day, and whether that meant I was "very" sick.  I don't even remember how I fudged my way through that.

That's the other thing. Getting to half way done was awesome. But the next day, when you still have half to go, that sucks.

I read an article this week on practicing non-attachment to material and temporary things. I'm thinking about this concept and trying to steady myself.

Six treatments to go. Treatments themselves are ok. I actually have started to fall asleep during them. Which is crazy. My head is locked into a large plastic table in a huge, loud space age machine and I'm falling asleep.

We replaced the ill-fated lamp today. Alls well that ends well.

Nine, ten, do it again.

How am I?  I don't even know how to answer that.

I've got headaches and nausea and fatigue. I'm on my fifteenth day on antibiotics for a tenacious infection. I have oozing wound sites. I may lose my hair this week. Kids are up between 5:30 and 6:00 every morning. I'm out the door for treatment, regardless of ice or snow or school lunches or teary boys, by 8 every weekday. By 10, I'm exhausted for a variety of reasons and the regular  day (pink eye, snack day, work meetings, follow up appointments, runny noses, bills, birthday planning) is just starting.

And I'm also fine. I'm happy with my energy and my focus. I'm enjoying my time with the boys. I'm so glad it's March. I've finished nine treatments. Ten tomorrow.  It feels like it is going quickly.

I'm not writing much because I don't have much to say. My days are full and at the end of them I collapse. (Miles loves that word and has taken to saying he is so tired he is going to collapse.).  I'm not high. I'm not low. Except when I try to write in a journal I've started for the boys. Then, I weep. Big tears, drippy nose, wipe your face on your sleeve sobbing. Otherwise, I'm steady.

I miss the old joy some. I have gratitude beyond measure, but it's not the same. This grief, this temporal awareness, strips away the quiet and easy joy of small moments.  Slow mornings, little snuggles, a silly joke, they all have a sharpness to them. Enjoy this, Kelly. Remember this, Kelly. No pressure, kid.

So, that's us. Jim's birthday is Tuesday. Miles' birthday is in a few weeks. Miles and Ian are both outrageous little boys. In good ways and rotten ways. And we couldn't be crazier about them or more proud of them.  And, like most folks, probably, we are somewhere between falling apart and feeling fine.

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.

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.