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.