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.