Thursday, February 21, 2013

Quick Update

Melanoma Man just back from the Cancer Center. The tumors are still shrinking. I'll try not to get too excited. Heart is acting up a bit.

Saturday, February 16, 2013

Can I do it?

At work this week, we are talking about words. About choosing our words carefully, about hurt and pain and compassion. It reminds me of this: Inside Compassion: Edge States, Contemplative Interventions, Neuroscience.  We don't often talk about the collateral damage of the work we do. I liken it to a fire. The clients I work with are on fire and I must get very close, very close to them in order to put out the fire. In doing so I am burned and charred and crusty. Sometimes it is more comfortable to just leave that crust on to protect ourselves from the fire in the next room. I have to keep picking and peeling the crusts off so that I may get up in the morning and do it again. 

And there is great love there at work. I think of our two front desk receptionists, C and D and all the love they dole out all day long. They are on the front lines, watching it all, hearing it all, offering encouragement. Two weeks ago C scooted her chair into the hall and whispered to me: "There's a guy with a knife in the lobby, what's the number for security?" She called, I called. Thankfully the guy with the knife decided to put his knife away, get up and walk around the hospital for a bit while we waited the TWELVE minutes for security to arrive.

I am steeling myself for next week when I will try to talk a teenager into wanting to do what it takes to  live and try to teach a homeless woman how to be a mother. I will try to fill myself with kind words and helpfulness so that I will have something more to offer than the charred crusts left on me from last week.

I will fill my weekend with reading, cooking, cleaning, laundry, basketball, ping pong, monopoly, drawing, pretty patterned paper, and church, hoping to be refueled for the week ahead. Hoping to be kinder than I am.

Thursday, February 14, 2013

Racing Death

Racing death nicely summarizes the pace and mood of my fall and winter. Sitting in the Cancer Center exam room with Melanoma Man late October 2012, Dr. W mapped out the natural progression of disease with no medical intervention, which would give us between six and twelve months. It's kind of silly that I say "us" because it's not my disease, it's his, but it feels like "us" to me.

"So it's a death sentence, then?" said Melanoma Man to Dr. W.

"No, no, not at all.  There are options. Let's see what the results of your BRAF mutation test shows. I've got two guys who have been on Vemurafenib for 3 years now."

Two guys, wow, I think. Dr. W isn't young, he's a year younger than Melanoma Man, 62 and he's practicing in one of the country's leading Melanoma programs. An he only has these two guys? WOW.

On the way to the car Melanoma Man says to me: "Well who would have thought your mother would outlive me? Timing could be just right though, you know. I figure you will be finishing up graduate school right around the time I'm ready to check out."

So I started out in January thinking I could manage just one little Pathophysiology class, my full time job, my two children and husband pretending not to have cancer. One little Pathophysiology class turned out to be 15 "mini-papers," one gigantic paper, a ton of reading, 5 weekly discussion board postings, a midterm and a final. I may as well have come home from the hospital with a newborn baby, rather than a Pathophysiology text book. Everyone ratcheted up their demands accordingly. And I was MAD all the time. Wishing everyone would just SHUT UP so I could WIN this race.

I did the right thing. I know I did, dropping out in the 3rd week. It feels all wrong to Melanoma Man. "I just want everything to be the same. I don't want you to change things for me," he says.

I'm not nearly as clever with the blinders as Melanoma Man is. I see truth shining through. The truth is that I can listen to I and W when they want to talk to me. I can play Monopoly for hours because they love it, even though I hate it. There is no race anymore. I can bake the cookies for W's class for Valentine's Day. I can wipe the tears of hurt feelings. I can be more like the Mom I want to be.

I'm holding my breath. Trying to remember to let the air in and out. Trying not to lie awake at night listening for changes in Melanoma Man's breathing. He turns on the Sharper Image noise maker to Spring Nights, so I won't listen to him breath.

Next week, more scans, more doctor's appointments, more time away from home. Then results. I think  I wish that Christmas was coming up again soon to distract and busy my mind.

Tuesday, February 5, 2013

This Week's Happenings

Friday night featured the Cub Scouts Blue & Gold dinner, which Is not my best occasion. Melanoma Man has been a Den Leader for four years now, so it is a command performance for him. In years past I have driven separately so I can escape early, the stimuli of that many little boys, their siblings & parents all in one room being just too much.

This year was different. Sometime mid-week my spirit went underwater. Submerged everything is muffled and I can tolerate the intolerable. I planned to take pictures this week, thought it might get me back to myself. But it didn't happen. Taking pictures makes me think of "lasts."

Monday night featured the Boy Scouts Court of Honor, somewhat more subdued than the Blue & Gold. Oldest son achieved Star Scout. A week prior MM woke me at midnight crying, sobbing thinking he had forgotten some crucial detail related to oldest son's Star Scout achievement. "I've let him down. He will be so disappointed."

In the dinner line at the Court of Honor my eye gets twitchy, a warning of tears on the way. I reroute my train of thought to the present and the storm of tears is averted.

Tonight I sit with oldest son at the pediatrician's office, looking at my shoes, wishing for a new pair of this discontinued model. I think of the children's movie "Meet the Robinsons." Keep moving forward, keep moving forward.

Saturday, February 2, 2013


It was a good week for Melanoma Man. He worked his way all the way to the bottom of the piles of paper that have covered his desk for as long as I can remember. A burst of doing and organizing that reminded me so much of the nesting we women do in the weeks just prior to the birth of our babies. Trying to make everything just so, just right, worthy of the new life that will dwell in the space of our homes and our hearts.

Over the past 5 weeks I started to think that Melanoma Man's grocery shopping days were over. He loves to grocery shop and cook too. We had 2 aborted trips to Winn Dixie last week, with him making it just inside the door before stopping to catch his breath. I looked at him, I looked at the motorized grocery carts, and back at MM. I couldn't do it. I couldn't suggest the obvious. It would have devastated him. So instead I said : "You wait here. I'll just dash through the store for a few quick things." And he said: "OK." He lets me carry the groceries now too because walking, breathing and carrying are too much for him most days.

He called me at work 6 times yesterday during his shopping spree. I couldn't tell if it was for reassurance or out of delight that he could do it. "The store is vast."

So proud he was, smiling when I got home. He had been of value, made a contribution, evidence of being still here, still an integral and necessary player.