Sunday, April 13, 2014

Finding Something She can DO

We were stopped at a light on the way back from voice lessons. A man stood on the median, tan, muscled and holding a cardboard sign that said- Hungry vet. Please Help. God Bless. My instant judgment was that he looked way healthier than me.  He accepted some bills from the car in front of me and the car behind. We made eye contact. I nodded. His gaze lingered.

Mom?- Lily piped up from the back.

Yes Lil.

Why do you not give money to the homeless guys on the corner?

Yep stabbing pain through heart.  So I explained that in all fairness, he looked healthier than me. But that there are a lot of needs in the world and I decided that I couldn't donate to every single one. That I give a lot of money to cancer research and supporting families with cancer, like ours.

Is it because you are worried that he's not really homeless? She asked.

In all honesty- it makes me uncomfortable. Because it is true. I don't know his circumstances, but my general judgement is that if you are able to walk back and forth on a median all day, there are options. And that makes me feel bad. I feel like a lesson in Karma's about to be all up in my business.

Well Lil, I give a lot to charity, I've, we've raised lots for charity and research- we did big Lemonade Stands, I give to friends when they raise money for causes or are in need and mostly I donate time.  I feel very strongly that if you are going to ask for money you should DO something for it- make lemonade, bake cookies, sell tickets. We are going to go to St. Baldrick's this year, it's not on Bella's birthday this year. That raises lots of money for cancer research and we have supported lots of friends who do this.

Why can't I shave my head? Lily has tears in her eyes.

No one said you couldn't. Lily, you remember being bald. You didn't have a choice. You have beautiful hair, everyone loves your hair. You don't really want to shave it off. It takes forever to grow back. We can raise money another way.

The cavernous pit between my heart and stomach grows.  Lily is sincere. She is calculated. She thinks. She is serious.

I want to shave my hair. I want to honor you.  Now I am the one fighting tears. Well played Karma, well played.

I send panicked texts to Phil and friends who understand. Phil says the same thing- we'll talk her out of it.  I'm not sure I want to talk her out of it, but I want her to think on it. My friends are supportive. Those who have fought cancer or have kids with cancer feel the conundrum.  You never feel safe after cancer touches you- you never know when it will reach out for you again. Especially with LFS. I don't want to ask my friends for money. They have been so generous with us and our causes over the years. A friend tells me- there is no worthier cause. I am so tired of being a worthy cause But GOD DAMN IT- if we are- then it has got to go towards making changes in the cancer world.

Shaving hair isn't a huge deal. But it takes us back to a time when life was very hard and uncertain. I am reminded that time was 5 years ago. And look at her now. Look at all this hair. That time there was no choice, she had to fight cancer in order to get better. Now she has a choice. She wants to do this. I feel horrible for not being excited. I feel bad that this is so emotional for me. I feel bad because I will have to publicly be emotional. I don't like to be publicly emotional. I feel bad because I worry so much that with Li Fraumeni Syndrome- there will be other times that she WON'T have a choice. There are so many worries and here is my 9 year old- embracing the attitude of mine 5 months ago- it is just hair- it will grow back- her NEED to DO something. I remember being that kid- watching my brother get sick, lose his hair and not being able to DO anything. So I signed up to go to Honduras for community service. I remember being that daughter- watching my dad's gigantic bald head- no hat on earth big enough to cover it- save a specially tailored cowboy hat- not being able to DO anything to make it go away. So I volunteered at Children's Hospital and got a fellowship at a cancer research facility. I am that mom- who watched her child suffer- because of a hereditary cancer syndrome. So I created a group for Li Fraumeni Syndrome.  None of these things could I have done effectively without help from others.

It is more important to me to support her in her need to do something than my need not to be reminded of a time she was very sick or my worry that this won't be the last time she is bald. And I worry there's not enough time to raise as much as she could and the effort and I am just so tired. Tired of cancer, tired of the sadness tired of the immense emotions it forces me to feel over and over and over.  And as a wise friend told me- it's not about the money she COULD raise, its about her empowerment and seeing that she can DO something and that she NEEDS to do it to support you.  I know that feeling so well- not knowing WHAT to do but needing to DO Something.  If we DO something perhaps it will prevent others from having to be bald in the future. It will prevent her from HAVING to be bald in the future.

SO it's time to put the tissues in my pocket and break out the waterproof eyeliner and help her DO this. I set up her page at St. Baldricks.  We made a video so she could tell people why she is doing this, I told her I would post it on my Facebook page and here.  We talked about why. She kept coming back to honoring me and kids with cancer. I had to remind her she had cancer. She is one of those kids.  And I am Honored to be her mom.

Lily's St. Baldrick's Page can be found HERE

Thursday, April 10, 2014

Trying to ...Look Good and Feel Better

I am not a girly girl. I've never been. I like some girl things. I dislike pink. Hence my being gifted 3 beautiful daughters. I do wear makeup- just not much. I've always thought there's too much more to be done than stand in front of a mirror looking at myself, covering everything up with makeup.  I would begrudgingly put a little extra effort in for date nights and outings. I will fully admit that I was comfortable enough in my own skin to generally just throw on some mascara and call it good. Maybe some eyeshadow and eyeliner for the big nights. And some tinted moisturizer and lipstick if there might be pictures.

When I started in chemo, my friend Lani took me to get a wig and brought me bags of moisturizers and gentle soaps and an eyebrow pencil. When the last of my eyelashes fell out- I was sad. It was hard enough weeks before when they thinned to the point of a big bald spot in the middle of my lid. Not exactly combover material. The eyebrows thinned and although one of the most famous women of all time- Mona Lisa will forever be missing eyebrows- that is also one of the main issues folks take with her image.

I've never thought Mona Lisa to be particularly inspiring. There is just something about eyebrows that adds expression, adds character. It adds definition. I started struggling with my own lack of definition. A mutant friend recommended the American Cancer Society's Look Good Feel Better program. She said it was really helpful since it addressed many of the new problems from chemo- drier skin, hair loss, acne. Plus- she told- me- you get one hell of a goodie bag! It's worth it- Go!

So the next round of chemo- when the American Cancer Society representative came around- I asked about it. She had me fill out a form and said someone would contact me to schedule. Sure enough- I was wandering around Walmart before Christmas when the call came.  The earliest appointment they had was at the end of January- which at the time seemed an eternity away. 

Fortunately an ACS representative called to remind me the week before- because as many things do these days- it had fallen off my radar. I had been through a few chemos yet still sported enough eyelashes and eyebrow hairs to blend in. But I knew their days were numbered and I needed some quality instruction on the matter. 

I wasn't sure what to expect. When I got to the room I was the only one there with 3 volunteers. One was a cancer survivor and two were make up specialists of some sort. Don't ask me to categorize further- it won't happen. We made small talk while we waited for the room to fill. I was surprised that it was only me and one other lady there- especially since I had to wait a couple months- but who knows. There were supposed to be more ladies there- but I'm sure that's a problem with scheduling for cancer patients- we're a fairly unreliable bunch. 

We watched a short film about the program and learned why we were there. If there had been a quiz- I would have been a star student- because I knew why we were there. The other lady there was fairly new to the chemo train. I knew this 1) because she still had hair and 2) she came full made up. I do normally put a bit of make up on when I go out- but I was going to a session where they were going to teach me how to put make up on- why show up with a painted canvas? Yep- I'm a star student. 

Then we got to unpack the bag of goodies before us. I'll admit- this was pretty exciting. It was a toiletry bag full of the supplies needed to turn my blank canvas into something a little more colorful. And all of it was mine to keep. All of the supplies are generously donated by local retailers and supplemented by the American Cancer Society. Like most non-profits- ACS is careful to partner with various organizations without specifically endorsing any. The cosmetic art supplies reflected these eclectic partnerships. 

The volunteers seemed pleased with the supplies and mentioned they really never know what they are going to have to work with. Make up is such a personal thing, sometimes they have to make do with less than optimal shades and supplies. But seeing as I was more there for the technique instruction- I wasn't bothered by the supplies generously supplied. It's way more than I have on my palette at home!  

We started the instruction and went over everything from moisture and sunscreen to the finer points of contouring and eyebrow shaping. This was the big reason I was there. I've always had plenty o eyebrows. More than enough to go around. Sometimes too much to the point of having parts of them professionally removed. Although I do not miss that- I do miss the particular definition they provided my brow.  The lady helping me was a personal stylist who volunteers her time because she enjoys helping women feel better by helping them look better. This is essentially the mission of Look Good Feel Better.  I can talk til I'm blue in the face about natural beauty and working with what you've got- but sometimes what you get isn't exactly confidence inspiring. 

When you are on chemo you deal with the side effects. At first you are taken aback by the more severe ones and as you learn to deal with those- you have to deal with the other fun side effects. My skin is always dry. Yet it breaks out like crazy after chemo- due to the steroids given to prevent nausea and allergic reactions. My eyes are puffy. Or maybe they seem puffy because my long thick lashes are no longer there to hide them. I already pointed out the finer problems with being a naked mole rat. But my skin tone has changed. It's not healthy or radiant. It has taken on that sick pallor that chemo patients get to varying degrees. 

I will admit I have been fairly low maintenance and lucky when it comes to complexion issues and this is really the first time I've had to deal with this or cared to. It does give me a healthy appreciation for why cosmetics are such a huge industry. I also hate that I need to rely on them to feel better. I am me, but I don't feel like I look good. I feel washed out and sick. I  don't generally miss having to fuss with my hair. What time I save not bothering with hair is now meticulously appropriated to evening out my facial canvas before recreating eyebrows. None of the make up specialists had any good advice on what to do about missing eyelashes- other than being a little more generous with eyeliner. And wear more lipstick so it draws attention away from your eyes. 

Although I guess people can see what I am saying through my lips as easily as reading my emotion in my eyes- but it is one additional connection lost. I find people do make eye contact less with me. Whether real or perceived- it is what I feel. Maybe I look at them less because I don't feel like I look good. By drawing in my eyes, perhaps too I can draw more people in. I never wanted to rely on make up to create me. But me is not chemo Jen- even though it is for now.  I appreciate the tools and the mission of the Look Good Feel Better program. It is about confidence and self image and those change dramatically during treatment. And although for many, the cancer treatment effects are temporary- for some they are not.  So perhaps not all cosmetics are to hide flaws, personality or physical- but a way to artfully present the way you want to be seen despite circumstances that don't allow it. For some they want to be sexy, or have flawless complexion, for others it's just enhancing their features. For me it's now a way to project myself as healthy. Sometimes that's just what you have to do to Feel Better. 

For more information on this great program- Look Good, Feel Better go to

Lily Kay Monkey

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