Itchy, Scratchy, AAACHOOO!!!

I’ve decided that having seizures is stupid. I didn’t sign up for it and I’d like to return that part of the Brain Cancer Special.  Wait…No…I’d actually just like a full refund. I’d like to return the whole package, please.

I had my vaccine shots yesterday (or we hope they are, anyway) and met with my Neuro-oncologist. He’s got a resident in rotation who is VERY thorough, sharing a lot of great information. We end up having longer visits, but we leave feeling like we’ve learned something.

What we learned yesterday:

1. What I experienced last week was Status Epilepticus. The scary reality is that IT may kill me before the brain cancer does. I know that sounds morbid, but it’s true. I now have emergency medicine and everyone in the house, friends, neighbors will be taught what to do if I have a seizure.

2. My Expressive Aphasia is likely a focal seizure rather than an aura. I’d suspected that may be the case, but the doctors agree. Since it seems to happen first, I find that every once in a while I’ll talk to myself out loud, just to make sure I can.

3. I likely had seizures because I’d been so anxious about the MRI and had been sleeping poorly. It’s doubtful that the 1/4 of a pickle martini I drank triggered them. I’m now back on an 8 week MRI cycle to reduce the anxiety.

4. There MAY be a correlation between migraine and seizure – but it’s very debatable, kind of like the chicken and the egg.

It’s taking longer than I’d expected to recover from this event. It may be adjusting to the new medication doses just as much as the seizures themselves. My energy level is low and I’m a little slower mentally – no quick retorts from me this week. Just getting my head around this new development is a little overwhelming and I may start wearing a helmet in addition to carrying Ativan in my pocket 24/7.

In other news: My vaccine shot site is itchy – enough to wake me up. The dog is still itchy – enough to wake me up. And I feel like I’m fighting a fall cold – but I may just be run down and recovering. Tea with lemon, honey, and cinnamon tasted delicious last night and I feel a little better this morning, so hopefully I’ll bounce back at any moment.

My mom is here helping out and I can’t express how much we appreciate her. When she leaves, we’ll be getting around on bikes – so I’m shopping for saddle bags.


The Downside of Stopping Chemo

I’ve had my last round of chemo (for now) and I’ve talked about why that’s a good thing, but I realized there may be a downside to it – aside from the obvious anxiety of my tumor coming back – which, let’s face it is there with or without chemo.

Here are my top 5 reasons stopping chemo is a bad thing:

5. I may no longer have an excuse for not cleaning the litter box (and I probably shouldn’t have just admitted that.)

4. I can’t use ‘I’m on day 4 (5, 6…) of chemo’ as a reason to leave the room and take a nap.

3. I will have roughly one less trip up the beautiful 280 freeway per month and will, as a result, see fewer deer and running cows.

2. My reasons for buying frozen vegan enchiladas for ‘easy comfort food’ because I’m tired/nauseous will be over. Now if I buy them, I’m just lazy.

1. My psoriasis will come back in full force. I will again leave a trail of flakes behind me as I leave the room. Shampoo rotation is now in full effect (dandruff shampoo doesn’t understand my problems – so don’t bother suggesting it.)

the_breakfast_club_timedandruff snow


Bumps, Divots, and The Wasting

We paid a visit to the most excellent Dr. Dodd today for my 6 month post-surgery check up. It’s really been 7 months, but it served the same purpose.

He agrees that my MRI looked great. As if hearing it from the neuro-oncologist wasn’t enough, it’s nice to know that 2 brilliant brain specialists agree. It was a pretty unremarkable visit since I’m doing so well at the moment and my primary care is oncology related, but it’s nice to see the man who saved my life and my brain function and tell him ‘Thank You’ once again. With any luck, I won’t ever have to see him (or any other neuro-surgeon) again.

We discussed the bumps and divots along my scar and the ‘dent’ in my left temple. These things don’t really concern me, I’m just curious to know what’s going on. They’ve become more obvious in recent months – perhaps as I’ve lost more weight. It’s funny that the first assumption made by the resident was that I was worried about how I looked and she immediately started offering cosmetic surgery options. I’m not entirely unconscious of my looks, but these things are SO minor compared to what some people go through after brain surgery. I’m proud of my brain battle scars and have hair that covers it all up if needed. But I was seriously just curious to know what was going on under my skin.

The bumps are caused by the titanium plates they screwed into my skull to cover the initial holes they drilled to get the saw in to cut a piece of my skull out to get to my brain and tumor (grammar police, I ask for a pass on that one please). Those plates look like throwing stars and apparently may be purple or pink. They do NOT give me super powers or set off metal detectors. The resident didn’t know why they come in pretty colors since no one can see them when it’s all said and done. My guess is that they help to make it easy for surgeons/nurses to identify different sized plates in the operating room.

The divots are caused by the gaps in my skull that remain after they replace that piece they removed. These are fairly small gaps so before you ask (you know who you are) NO, I do NOT have new Fontanelles.

The dent was identified as ‘the wasting.’ Now, I don’t know about you, but that conjures up an image of the effects of extreme illness on a body. I’ve lost a fair amount of weight, but I don’t think anyone would say I look like I’m wasting away. BUT, anyway, the dent is caused because the facial muscles that connect my skull to my jaw had to be cut during surgery. They reconnect it all as best they can, but some of those muscles essentially atrophy – i.e. waste away. Some patients have more ‘wasting’ than others. Apparently there are no exercises to rebuild these muscles – once lost, they shall never be returned to their former Arnold Schwarzenegger-like appearance. So, my hairstyle has to suffice to provide any necessary camouflage if desired.

So now you know.

Here are some flattering pictures that will perhaps make this post more interesting.


This is me making a duck face for the camera before I had my stitches taken out. The ‘wasting’ isn’t showing yet because I’m still swollen from surgery.  


You can see the ‘wasting’ in this photo…and perhaps even how little I actually care about it.

Hair! Not The Musical

Hair – it’s a part of who we are, how we define ourselves, the image we present to the world. Whether you have long, short, straight, curly, thinning, colored, permed or no hair at all. Some people change their hair like their clothes – following the trends or making bold changes just for the fun of it.  Some people haven’t changed their hairstyle since high school. Some people hide their grey and others wear it proudly. Some truly believe a comb over isn’t noticeable, some go bald with confidence, and others just shave it all off. Some spend a LOT of time styling each day making their straight hair curly or their curly hair straight – using tools and product that I don’t even know exist. Some just wash and go. Hair is a multi-billion dollar industry. People are famous for their hair – Donald Trump, Jennifer Aniston, Dorothy Hamil, Yul Brenner…

Kids can get sent home from school for dyeing their hair the ‘wrong’ color. That’s always seemed ridiculous to me – there are SO many worse things that kids could do – what’s wrong with them playing with the one non-permanent thing they have control over. If my kid wants to dye his/her hair purple and wear a mohawk – I’ll support it. A tattoo, on the other hand…my kids think you have to be 35 before you’re allowed. Shhh…don’t tell them. But hair…it can be changed.

My husband’s barberess (that may not be a word, but yes, a woman…in a barber shop) recently shaved her head. She had long hair – almost to her tush and without it, she looks very different (my husband tells me, anyway). She explained that it was an act of ‘letting go’ and starting over. I’m not sure if she explained it as a part of her Bhuddist practice, but I suspect it has something to do with it. She wears her baldness confidently and proudly – stating ‘It’s just hair. It grows back.’ She’s right – for most of us, at least. I thought this was an amazing example, though, of letting go of something that we all hold to be so critically important to our image of ourselves – something that we use to define ourselves to others. Ultimately, it’s not our hair that defines us, but our thoughts, actions, and relationships. But we live in a society that places so much value on outward appearance – so it’s hard for me to imagine letting go of it so easily. Of being so vulnerable to those social judgements, by choice.

I lost some of my hair pre-surgery – thanks to Dr. Miller’s skill with a razor. I lost some more of my hair for surgery itself – maybe Dr. Miller again. I lost even more of my hair starting week 3 of radiation treatment. Losing your hair in ‘handfuls’ is a very odd and disconcerting experience, I’ll admit. I hid my strange bald patterns under a hat – mostly because I was cold with the middle of my head being bald, but I was also very self-conscious about my reverse monk style.  My hair is longish, but it’s thin – so even though the bald spots (just over my ears, all the way around my head) were largely hidden by the hair I had left, it was still quite apparent. I didn’t lose it all – and I wonder if I had whether I would have worn a wig. It’s really hard to say unless you’re in the situation – looking at yourself, bald in the mirror. But I think I would have forgone the wig.

I spent time worrying about whether my hair would 1. grow back at all 2. grow back a different color and 3. grow back a different texture. People have had experience with all 3 or a combination of the 3. I actually contemplated shaving the bottom half of my head, under the bald area. When I asked my Radiation Oncologist about my hair during one weekly appointment – he mentioned they have a way to address it with folks who have only lost part of their hair during treatment. I didn’t ask how – it likely involved more toxic chemicals and I decided to take the ‘wait and see’ approach.

Well, my hair is growing back the same color and texture as the rest of my hair (thank goodness). I only have one area where the hair seems to have given up altogether (i.e., I have a bald spot which will likely be permanent). But because of the different times and ways in which I experienced my hair loss (i.e. razor and falling out), I have hair that comes in all lengths – and it’s not just the way it’s cut/styled. The funniest spot is the ‘Alfalfa Sprout’ on the top of my head. I don’t wear a hat anymore – unless it’s for sun protection or because I haven’t made it to the shower yet and have to go out in public. Mostly, you can’t notice the oddness that is my hair and honestly, I don’t care – I earned that oddness and I’m embracing it proudly.

BUT, it’s time for a haircut. So…what to do?  I’m afraid I’m not as bold as my husband’s barberess, so I have a more complex decision. Shorter to aggressively start to get to an ‘even’ length? Just a trim to reduce my split ends, but not lose so much weight that my crazy 2 inch long spots can’t be contained? Somewhere in the middle? Haircuts cause so much turmoil! I’m not very fussy about my hair – these days I’m usually a wash and go kind of person, but as it’s growing back – I’d like to have the chance to primp and preen if I so desire.

I’ll probably spend some time looking at hairstyle pictures in the next couple of days. I may go bolder, but it depends on my mood. I’m not hormonal at the moment, so I’ll likely make a well-researched, thoughtful decision (if you can do that with hair.) I am intrigued by the cool temporary colors available today and I’m not working in an office at the moment…so if there’s a time to go wild, it’s now.  I’ll let you know how it all turns out on Friday.

Itchy and Scratchy

I mentioned a couple of times that I have psoriasis. For those of you who don’t know – psoriasis is an autoimmune disease of the skin. Mine is of the plaque variety, but there are many different forms – some very painful and debilitating. Psoriatic Arthritis is a fairly common development for Psoriasis sufferers and there is an increased risk of other health issues. If you’re interested in more details, you can find more information here.

Mine is mostly on my scalp, but pops up on occasion in other spots. It would be considered a minor case considering that some folks with psoriasis have it on 90% of their bodies and end up in the hospital to control the pain and other symptoms. For me, given what other people suffer with this disease, it’s mostly an annoyance. It’s like having the worst case of dandruff you could ever imagine. Sometimes the spots on the other parts of my body hurt – especially if I have a breakout on my face – which doesn’t happen often.

I’ve tried a lot of medicines – mostly topical creams/ointments containing steroids. Some helped, some didn’t. But eventually, it came back and very often worse than when I started any given treatment. I decided – as my psoriasis flared at one point – that I needed to do something to treat the potential root causes. One of the (now ironic) risks of scalp psoriasis is hair loss and I really didn’t want to lose my hair (ha!).  I stumbled upon Dr. John Pagano’s Healing Psoriasis: The Natural Alternative and a couple of other books that seemed to point to similar triggers and approaches.

So, I changed my diet. I stopped eating nightshades – peppers, tomatoes, eggplant and some other foods thought to be triggers, like strawberries. I already avoided sugar, but I cut way back on my drinking (like, 3 glasses a week to 1). I also tried to switch to all natural products – minimizing my exposure to chemicals – shampoo, soap, makeup, deodorant, etc. I started taking supplements that Dr. Pagano recommended – drinking Saffron tea, taking slippery elm and lecithin capsules. I did a 2 week cleanse. Not only did my psoriasis nearly disappear, but I lost about 15 pounds. It was pretty remarkable. For the first time in my adult life, I didn’t leave a trail of flakes behind me as I left a room.

But, psoriasis is a fickle beast. Eventually it stopped working as most things that help seem to do. Shampoo, cream, or medication rotation is a common trend among sufferers.

I had also heard that chemotherapy would reduce or eliminate psoriasis. Some folks who don’t have cancer actually begin a chemotherapy regimen to control their severe psoriasis. They are so desperate for relief, they willingly take chemotherapy drugs. I figured that – aside from battling the beast in my brain – it was maybe one of the only benefits. I think it probably did help during that 6 weeks of non-spa treatment. But maybe I just didn’t care as much. It’s come back since then. As it always does.

After watching William Li’s TED talk on anti-angiogenesis, I thought that in my efforts to control my annoying minor case of psoriasis, had I inadvertently fed sleeping cancer cells in my brain – triggering rapid tumor growth? There are some who dispute William Li’s claims of anti-angiogenesis effects on cancer, but every theory/approach/treatment has doubters. If we knew what ‘worked’ to prevent/treat/cure cancer there would be a news story or two about it. We’d need less money for cancer research, not more. Each cancer is different, each body is different – it’s all a mystery and there’s never likely going to be that ONE thing that works. As much as we all might hope.

So, I eat tomatoes, strawberries, peppers and the other things I tried to eliminate to reduce my risk of losing my hair (ha!). My psoriasis is back – sometimes it’s worse than others. But IF anti-angiogenesis has any chance of helping control my brain tumor (or other potential tumors) – I’ll eat those foods that have shown to have an effect. If chemotherapy continues to keep my beast locked away, with or without a potential benefit of helping my psoriasis, bring it on. I’ll take an itchy head and a few days of nausea over a terminal brain tumor any day of the week.

Auras and the Dreaded Threshold

When I had my first seizure, I just had it – no warning, no aura, no nothing. Just BAM!

The second one had the mother of all warnings – we just didn’t know it.

One day, I forgot to take my morning dose of anti-seizure medicine. Around 1:00, I was trying to talk to someone and couldn’t get the words out of my mouth. They were very clear in my head, but I could not get them spoken. I could say some things, but not others. It was a very strange and scary situation.

I managed to get my neighbor (my hero and friend) to go pick up my kids from school and my husband raced home to take me to the ER. They were concerned that I might have been having a stroke or a brain bleed. At the hospital I was filling out paperwork…or starting to…and I kept trying to write my maiden name. I knew it was wrong, but couldn’t get the right name from my brain to the paper. It got worse from there and my memory got pulled into the fun. Since they thought I was having a stroke, they brought me in to see the doctor immediately. I don’t remember much more than glimpses after that. My husband tells me that at some point, after I couldn’t speak at all, the doctor was asking me if I could write down answers to the questions he was asking. I nodded, but wrote down nonsense. I eventually had a seizure.

Tests showed no brain bleed, no stroke, no new tumor activity – which meant that it was likely a seizure aura.  Some people have illusions, smell strange things, have deja vu. I had expressive aphasia.  It is not a typical aura, but is more often associated with brain trauma, tumors, stroke. My aphasia was gone after I recovered from the seizure, though I can’t say my memory became immediately crystal clear. I can only imagine how frustrating it would be to have expressive aphasia that didn’t go away when your brain came back on-line, so to speak. There are many people recovering from strokes or brain trauma who have to work long and hard with speech therapists to be able to say the simplest of things to their families.

It was scary for me, my husband, and my neighbor. They had thoughts that the tumor was back, that ‘this was it,’ that the other shoe was finally dropping. We knew why I had the first seizure and it (the tumor) was removed. I was on anti-seizure medicine merely as a precautionary measure. I only missed what was later referred to as a ‘baby dose’ – one ‘baby dose.’ All of this brought us into new territory. Because of the tumor and surgery, I now have a seizure disorder. A seizure disorder that’s now being controlled with more than a ‘baby dose’ of medicine.

I now wear a medical bracelet. We already had reminders set up on 2 phones, but my husband now sends me a text when HIS alarm goes off to make sure I didn’t turn MINE off, walk away and forget to take my meds. My kids and friends will ask ‘did you take your medicine’ any time I say I feel a little strange – usually I need to eat or have a teeny headache. We’ve learned a lot about seizure thresholds. Depending on the individual, that reduced threshold could be triggered by too much sugar, having a glass of wine, not getting enough sleep, taking allergy medicine, or any number of other things. For each person, it may be different.

We are trying not to be too insane about what mine might be – this isn’t something I’d like  to ‘experiment’ with to figure out. I may be erring on the side of caution, but I’d rather live without constant fear of compromising the threshold than risk it for the joy of having a cocktail. I eat well and stay hydrated, I don’t drink alcohol (except for the occasional sip of wine – I AM married to Wilder on Wine after all), I avoid sugar, I try to get enough sleep – naps are sometimes needed to make that happen, but they happen. We may continue to be a little over-cautious, but I think everyone feels a little better that way.

Silence, I Command Thee!

Another post surgery / treatment side effect:

It started post surgery, so I’m assuming it was the cause, and it continued throughout the 6 week treatment phase. This one effected everyone around me, so I’m sorry friends and family.

I became ridiculously hypersensitive to sound and activity. This in my house full of musicians and music lovers – including a child who sings constantly.  No seriously, he rarely stops. We played no music from October 12 to late January. No radio, no CDs, no iPods and worst of all, no instruments. In my house are drums, cajons, didgeridoos, bongos, a cuica, tambourines, flutes, electric and acoustic guitars, a piano, a keyboard and an accordion. You might ask, ‘How can you stand it when you’re NOT hypersensitive?!’ Good question. I think they found any reason for me to leave the house just to be able to play something…anything for even a few minutes.

In the car, the sound of the turn signals was excruciating. The little repetitive noises that my children make were excruciating. The television, at what any other human with normal hearing would call quiet, was loud. The gym where the kids take classes – that was the worst. Multiple sources of noise at once sent me into a desperate attempt to escape.

Aside from the moratorium on music, the hardest part of this new super hearing was living in a house with 2 young kids – who, being young kids, naturally make noise.  They play, they argue, they get mad, they make noise. My husband and my mom (who basically lived with us for a few months) spent a lot of time reminding them to be quiet, asking them to lower their voices.  Essentially, asking them to be less childlike.

Earplugs became my constant companion. I used them inside the house, when I went out, when I went into stores/restaurants, when I saw a movie, pretty much any situation where I couldn’t ask someone to turn the sound off.

Next time you walk into a restaurant – put yourself in the shoes of someone who is sensitive to noise, someone who falls into the autism spectrum for instance. I walked into a ‘restaurant’ with my husband for a quick lunch one day and within seconds, I wanted to leave. I couldn’t hear the questions my burrito builder was asking. The volume of the music was bad techno club level. I couldn’t believe I hadn’t noticed the volume in these ‘restaurants’ before then.

I was worried, of all the things I had to worry about, that this would be my new normal.  My neurosurgeon hadn’t heard of anyone developing this new hypersensitivity before. My neuro-oncologist hadn’t either. I like nothing more than throwing curveballs at my medical professionals.

Eventually it got better. If I’m tired, I still can’t handle multiple sources of noise at once. Music is now being played in the house – live AND recorded.  Which is good for my family’s happiness and harmony.

Misty Watercolor Memories

Ah, the frontal lobe…memory, emotion, speech.  Let’s take a look at memory for a minute.

Everyone forgets things every day. Ever walk into a room and forget why you went in there?  Gone to the grocery store and realized the moment you got home that you forgot the one thing you really needed to buy? Forgot a birthday of a loved one? Forgot to pick your child up from practice? You know what I mean. Everyone forgets. Our lives are over-busy, over-scheduled and over-stimulated.

While I was recovering from surgery – idle time is not good for me – I was going back through the previous year and wondering…was that an unreasonable amount of forgetting? What about that? Now, that wasn’t normal forgetting, was it? I was looking hard and finding all kinds of examples of where my brain may not have been functioning ‘normally.’ Many people have told me when I’ve mentioned these examples that they experience the same kind of forgetful moments.  So, were they signs or was I just a regular ol’ over-worked, over-tired, over-stimulated human being?  I really don’t know.

Then, I have days that I straight up don’t remember. I have days or moments that I feel like I’ve forgotten, but then I get a prompt from my husband and I remember, mostly. I have moments that if I think hard enough about the context around the moment, I MAY remember. Then there are those strange, unnecessary memories that I pull out of my head without hesitation – like our phone number from 10 years ago or a name of an actor from some random show I watched twice in the ’80s.

The most unsettling, as you might imagine, are the days I don’t remember at all. The days in the hospital before surgery. Most of the days following surgery. Some moments during chemorad. The days after my second seizure. Having absolutely no memory of those days, having to be told what happened, what I said, what the doctors said is very strange and frustrating.  Luckily, I didn’t do or say anything during those times that I’d be embarrassed about – so it’s not really like drinking WAY too much and blacking out. I don’t like feeling out of control, which is why I’d never make a good drug user.  These days that I have no memory of are terrifying to me (and frankly to my husband and kids), but they’ve luckily been few. I’ve had people who love me there who can later remind me that it was all ok and I didn’t dance on the tables in my underpants trying to sing some MC Hammer.

The anti-seizure drug (Keppra), when my dosage was increased, made my memory worse. It’s a common side effect (not an uncommon one, like possible brain tumors from radiation treatment…for brain tumors.) I think it got better as I acclimated to the dosage. But, I find that sometimes my internal thoughts veer off from the words coming out of my mouth. Most of the time, I catch it and get back on course after explaining what I really meant to say (like when I told my husband that my sister-in-law really said TORNADO warning, not TOMATO warning), but sometimes I don’t. I used to be able to make lists in my head and remember them more than 5 minutes later. I’ve always been a list maker (and yes, I’ve sometimes written down ‘take shower’ just to have the satisfaction of crossing it off), but now I have to write it down immediately or I’ll forget. Even the simple things – do laundry, fill bird feeders, clean up that huge pile of papers sitting in the middle of the floor that you have to step over to get out the door (ok, maybe not that one). I used to be able to multi-task, now I can’t do more than one thing at a time if one of those tasks requires any level of concentration. I have to write things down to remember them most of the time. I’ll sometimes get an email or voicemail from a friend or family member and if I can’t respond immediately, I’ll forget to write/call back for days until I happen to stumble across it again (my apologies folks, but don’t take it as a sign that I’m ignoring you, I’ve just forgotten temporarily.) That’s not so bad in the grand scheme of things that could have happened to my memory. And I’m learning that maybe my expectations for myself are sometimes a little too high and looking for those examples of imperfect memory is probably a waste of my precious time.

Numbskull and The Scar

More side effects:

Numbskull:  One of the strangest side effects of brain surgery has been having a numb scalp. An itchy numb scalp. When they shave your hair off and cut into your scalp to get to your skull, nerves are severed. Muscles in your scalp are severed.  Where that incision is made will change which muscles are cut, obviously. With a frontal lobe tumor, it required a 6 inch incision just behind my hairline. As a result, some muscles that I use to chew were impacted. This didn’t mean I couldn’t chew, but it felt like I’d also had some serious dental work done. Aside from the jaw pain, the rest of my scalp was numb…but itchy.  How does something that you can’t really feel itch so badly?  I have no idea.  Now, 5 months later, most of the feeling in my scalp is returning. While it’s improved, I still have some pain in my jaw. These are minor side effects of my experience and almost not worth mentioning — except that they’re noticeable to me every day.  As an aside, having a numb scalp can also be a side effect of Multiple Sclerosis which is another perplexing and unpredictable disease that needs research funding.   You can learn more and help support a good friend of ours who’s also experiencing a numb skull – just click here.
The Scar: As I mentioned, my scar is about 6 inches from just above my left ear to the top of my head – right behind my hairline. They shaved just enough hair off and when it all grows back, you should barely be able to see that scar. I had sutures, some people get staples. I think the surgeon chose sutures because they cause less scarring and because he’s kind and didn’t want me to have a scar that would terrify my children and their friends.  Maybe not, but I like to think that’s the case.
After a craniotomy, you also get strange bumps around the site where they’ve removed and replaced your skull after noodling around in your brain. These are generally small and unremarkable and will be hidden under my hair (assuming it does all grow back), but I have one bump that will never be covered by my hair. People probably won’t even notice it unless I point it out to someone…at which point it will become enormous in their minds and they won’t be able to stop staring at it, ever.  I also have a ‘line’ right above my left temple.  Essentially, the shape of my face has changed a little and my skull has a ridge or my temple has become a little more concave, like I’ve had part of my brain removed or something. I’ve lost weight through this process, and I think it’s made that change in my bone structure become more pronounced.  It’s like having well-defined cheek bones only it’s higher (as in nowhere near my cheekbone) and only on one side and it doesn’t make me more likely to become a super model.  I’ve just started to brave the world outside without hiding under a hat – my daughter reminds me to not tuck my hair behind my ear or wear my sunglasses on top of my head because it pulls my hair back. She tells me it looks ‘freaky.’  I tell her it’s a battle wound that I should wear proudly, just like my belly button (which was totally changed by my pregnancy with her).  It means I’m a survivor.