Wednesday, July 30, 2014

Bad Hair Day

Last week the girls had auditions for Little Mermaid Jr at PACK. The practiced their little hearts out and I was really impressed with how well they auditioned- even Bella, who up until a few weeks ago I was convinced was tone deaf. Turns out the deep little tone she likes to hear herself in- isn't her only tone and their voice teacher is nothing short of a genius because she actually can sing for him in this really cute little voice.  Lily and Kiera both got call backs which was a new experience for us- and a positive one. They aren't quite ready for the major roles- even though they are pretty sure they are- but they are paving their way. I'm mostly excited that it's a show I adore- because for the next three months it's all that will be playing as we drive back and forth.

At the first rehearsal, they did a read through. I sat and listened. One little girl just kept staring at me. I get used to it. It's so much easier to deal with kids than the adults.  When the parent next to me left she relocated herself to the chair next to me, continuing to stare.



Her script lays closed in her lap, she is petting her hair- just like Ariel in the movie, so I ask her-Can you follow along in your script?

Nah, I can't read any of it. She has the most incredible glass green eyes. I don't know maybe they are hazel- but they are clear- like sea glass- I've never seen anything like them, they are amazing.  I smile and open her script and point to the words.  She leans in and whispers I just got a haircut. For the summer. I had A LOT taken off. 

Wow- that's cool I tell her. She smiles. I spend the rehearsal telling her when to turn the page and answering her questions about the show.  When I relay the story to Phil later he looks at me and laughs- so you never told her what happened to your hair?  Nope- she didn't ask.

For the past few months the conversations I have with people centers around my hair. It's kind of silly because even though I took care of my hair- it never dominated every discussion as it does now. I know people are curious and I prefer it to the quiet stares- but sometimes it feels like it's all I am now.

It's so soft. 

It's such a great color.

It's coming back in. So you're done with chemo?

I wish. But we are on to a new routine. A routine that this far has me feeling better for a couple weeks more.  Monday I just had Herceptin and Pertuzumab- both monoclonal antibodies and far easier on the system and I get those every 3 weeks from now until forever. I got a shot to keep my bones from self destructing and another shot of B12- which I highly recommend. That stuff is gold. And not having abraxane is gold. But all that glitters is not gold and for now, every 6 weeks I will still get abraxane- to keep the glitters away. It also will keep the hair away. Which kinda sucks.

As we sat in chemobay- it was a different crowd. We got up early to get done early.  We got the corner chair- because it's not that we aren't social- I just prefer to meditate or sleep while I get drugs pumped into me. Plus almost everyone else here has the same hair as me -so what on earth could we possibly discuss? Phil has a new app that has a million levels just waiting for him to dominate. Sometimes we play a little scrabble. A woman walks in with a toddler in a stroller.  Children are never allowed in the chemobay so I kinda worry about what she has going on that they overlook this rule for her. A very big slovenly child and by child I mean 20 something- who we had previously seen snoring away in the waiting room- shuffles in. He plops down next to his mother in one of the chemo recliners pulls the tv around and turns it on very loud- oblivious to the dozens of eyes following him.  I hadn't realized it was bring your kids to chemobay day. I look over to the toddler who looks at me and I shrug.  He pats his hair and shrugs back. I look over to Phil who witnessed the exchange and we both look back to the toddler. He again rubs his brown tresses, shrugs and looks back to me.

Phil- SO um, I guess he noticed your hair.  It is pretty cool.   Then he rubs my head.  The little one rubs his head in this strange monkey see monkey do game we have going on. I laugh because the only alternative would be to cry and I'm stronger than that. And then I take our chemobay pic.

Yeah- that's kinda how it goes these days- even my nonverbal conversations with toddlers center around my hair or lack of. I like my new hair- my butch cut as my mother called it. It was soft. It kept my nugget skin shielded from the sun and air vents. But it was starting to come out. My head had that burning itching it gets every time after abraxane- the nasty little necessary evil that it is. I was kinda hoping it would just thin a bit. But last night my shoulders and chest were covered in fine layers and I felt more like a family pet. I took a shower to rinse it off and gently patted my scalp. As I pulled the towel away, I was again coated in a shedding of little hairs. I don't want to do this again and again and again. I had so hoped this routine would let me keep my little hair. Just a little to protect from the sun. But no.

It had been a good day physically, but I was exhausted emotionally. I had a friend having surgery. Another who was recovering from surgery, another whose husband was rushed to the ER for a possible heart attack. Friends that I would normally drop everything to be at their side and I couldn't. I'm barely keeping up with all our activities. Not just my hair was falling out- pieces of me were falling apart. And yet this was so stupid compared to the crisis in so many people's lives.

I asked Phil to shave it. It was long enough and thick enough still that it was a process. I kept my eyes tightly closed. I hear Bella come in, her little hand on my back. It feels heavy. All of it. It's not just the hair. Its the reminder. Not being what I want. Things not being easy. It could be worse. It could be worse. It could be worse.

What's wrong with mom? she asks as she pets me.

She is not pleased with her current hair situation.  Phil responds.

The little hand still petting. I thought the water from the shaver was dripping, but its coming from her eyes. Does it hurt?

Yeah- Phil tells her- It hurts.

It's really not just the hair or the bad hair day. It's the learning to live with cancer. This is how it is and it is about making it work. Just like an unruly cowlick. Or curls in humidity. I don't have to worry about that. Sometimes things hurt. On lots of levels. So I let the hairs and the tears go because I hope as each one leaves so will some of the hurt so I can focus on moving forward and not on that. Because it could be worse.

Sunday, July 6, 2014

Back to Chemo

So vacation's over. Tomorrow is back to the chemo routine. It's kinda like going back to school- the knot in your stomach. I know it needs to be done. It's just hard. It's tough feeling tired all the time and being leashed to the bathroom. Even though I've learned some tricks of the trade- I still notice things like when I take the girls out to lunch and a table just stares at me. Every. Damn. Time. I look. Up- I meet 6 eyes just staring. I smile the first dozen or so times- no smiles back just hard stares. So I put up the invisible wall and enjoy my girls.

Last week I felt good and in between running the kids to activities- I would stop and get salad, or a hamburger or ice cream- things I've found just don't work on chemo. I even had coffee.  Then the anxiety attacks start. I'm sure it was the coffee. Then I have a minute alone and think, huh- I kinda feel ok- maybe next week I'll take the girls to the pool or to the beach. Slam- reality hits- Monday starts the routine over again. Damn. I will not feel like being near the pool or the beach.

Bella comes and hugs me after dinner. She's been sad. Do you have to do chemo again? Yeah I do. But you are no fun when you are on chemo. Well there goes any illusion that I kind of sort of had been doing OK.  It makes me so irrevocably sad, I disappear upstairs to have a few moments. No one notices- as it isn't unusual for me to have to disappear after a meal. Every night Lily says goodnight- not sleep tight but now she says- feel better. FEEL BETTER.  Then I feel worse because I wonder how hard it would be to pretend to feel better. Because apparently my pretending has been subpar.

And I feel bad because on the scale of paper cut to flu- it's really like a mild gastroenteritis. It's not that bad and it sure as hell could be worse. And I was NOT prepared for the emotional whammy provided when you have your ovaries yanked out. I mean everyone knows theres an emotional component and I know that- but on the scale of I don't like my new haircut to the love of your life just died- I figured it would be closer to my friends went out without me kinda pain. When you deal with the really heavy stuff- you sometimes underestimate the biologic capabilities to knock you on your ass. In the past month I've been reduced to puddles of goo over seemingly ridiculous things. Each time Phil comes to the rescue and makes me feel like I have not just completely lost my mind.  The worst was the one time I thought I was completely alone and was wallowing a bit in said puddle and then I feel these lanky 14 year old arms around me.  And I feel even more abysmal- as there is some unwritten rule about losing it in front of your kids and I have lost it so far that I cannot even pretend to try and pull it together. Yet he holds on and doesn't even let go when I think I may have found that relatively slight string to which I might be able to pull myself out of said gooey puddle.

So tomorrow, Monday I am to show up to the chemo bay with a plan. My oncologist is awesome and lets me choose my own adventure. I know I have been relatively lucky on the side effect front. That being so- it gets old.  I wonder if staying the course is the best way. I wish I was the strong stoic sort who could power through unfazed- but I am fazed. I don't blog a lot because I don't want to seem pessimistic but more often than not I just don't feel like it. I don't feel like sharing this part of the chemo journey with everyone- why should I make everyone miserable just because it's not all pink ribbons and parades. I know this is part of the process. And I feel bad because it could absolutely totally BE worse and I know at some point- possibly sooner it could BE worse if I make the wrong call with treatment.  But as my onc kindly pointed out- sometimes things get better or worse for no good reason at all and it's about quality of life. And even I got into the routine- our new messed up normal and forgot to look ahead. I forgot to plan ahead like there was a destination and spots to see along the way. So we will be decreasing the dose of abraxane- which is the toughest to take. I will probably do that one every other cycle. I will keep up with the Herceptin and Pertuzumab as usual every 3 weeks and hope for the best.  This will give me a little more time to feel better and maybe do some things and maybe get a little bit of fun back.  

Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)