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.