Friday, September 21, 2018

The Ugly Spectrum

I’ve been having a lot of angst about my hair. I know. I KNOW! I’m so lucky to have hair to be stressed about. I know this.

And yet, I have to look in the mirror every single day, several times a day and I have to see my hair and it’s awful.

Tom told me recently that I am the only person in this entire world who thinks my hair is horrible.

I know he’s right and yet, as I told him, I’m also the only person who has to look at myself every day. I hate it so much right now.

Next week? I might love it. Probably not but it could happen.

See, here’s the thing. Ugly is a spectrum. There are different levels or stages of ugly, if you will. Right now, I’m on the very far end of the ugliest stage of ugly. I’m not happy at all.

Next week, I will be somewhere else on the Ugly Spectrum. I hope to inch my way up toward the Less Ugly end but who knows.

There is a spectrum of pretty too, but I’m nowhere near that one. I hope to get back on it at some point but I’m not holding my breath.

I realize that everyone out there (if anyone were reading this) would tell me I’m being ridiculous. I know I am. But I can’t help it. I can’t look at myself and see anything but the far end of the ugly spectrum. It’s sad really. I’m kind of sad, actually.

But I keep reminding myself that I’m so lucky. I’m alive. I have hair. Heck, one of my biggest complaints is that it’s thick and unruly. I realize how stupid that is. People WANT thick hair. Hell, I want thick hair. But not THIS particular thick hair, at least not today.

I’m ridiculous. I might be crazy. I know this is all residual issues relating to cancer and cancer treatment and figuring how to live after all that. My hair is just the most visible thing I have to focus on right now. I can’t focus on my stupid boobs, I can’t stop potential cancer from growing again. But I can bitch about my hair from now until next Tuesday. I can obsess about the stupid curl at the back of my head on the right side. I can worry that I’m starting to edge into mullet territory. I can think about when I’ll need to dye my gray roots again.

Hair is trivial, which is why I’m making such a big deal about it. The big stuff, the stuff that really scares the hell out of me, I can’t control any of that. I can, sort of, control my hair. So that’s what I cry about. If I were to start crying about cancer and all it entails, I might never stop.

Thursday, September 20, 2018

A Good Kid

A Good Kid

As I was hugging Lyss goodbye this morning before heading to work, she asked, “Do you want me to stop Dad from helping Livie with her homework tonight?”

I replied, “No, I don’t think he’ll try and help ever again. But thanks.”

She smiled and went back to brushing her teeth.

She’s a good one, that girl.

Our homework saga from the night before isn’t worth rehashing. I will just say that everyone learned their lesson. Some lessons were more painful than others but everyone learned.

As I started down the stairs, she called to me. “I’ll just keep an eye on them, play referee if I have to.”

I laughed and headed to work, confident that there would be one level head in the house until I got home.


Wednesday, September 19, 2018

Who Gets to Decide Who’s Ready For What?

We spent Sunday afternoon in Battle Creek, Michigan with my mom and aunts and cousins. My Auntie L hosted a second annual tea party in Sabella’s honor. Sabella is the daughter of my cousin. She’ll be thirteen in November. She’s wheelchair bound and is ‘homeschooled’. I put that in air quotes because I’m not sure how much schooling she actually gets. She’s incredibly lonely. The school she attended for the first few years of her schooling life was horrible to her and so her mom pulled her out of school, intending to homeschool her. But S is very stubborn and her mom works and so…she doesn’t get much schooling is what I’m saying.

But that’s not actually what this post is about.

It’s about my aunt L and her homophobia.

Let’s back up a bit. Alyssa was hounding me all weekend about leaving this party early because she wanted to go see a movie with N. I’d reminded her several times that she’s pretty much spent the entire previous week with N because FAIR WEEK. She acknowledged this but still wanted us to leave by 3:00 so she could see that movie.

Sigh.

When we got to the party at a little before noon, we were some of the first to arrive. No big deal, we helped with final set up and picked our table.

My cousins E and L arrived soon after we did with E’s daughter S and E’s niece M. M quickly zeroed in on Lyss and they introduced themselves. M is seventeen, though she looks about thirteen. She’s adorable, for what it’s worth.

They became fast friends. It was nice to see.

As the Tea Party got started Auntie L read a letter my cousin H had found in our cousin Amy’s trunk. Remember Amy? She died this past February. Amy had stored some things at H’s house and so H went through them and found a letter that had been sent to my grandmother from her daughter, Debra. Debra died when she was nineteen. This letter had been sent to my grandma just a few months before she died.

After she read the letter, Auntie L talked about when Debra first got sick at thirteen. She said that after Debra came home from the hospital for the first time a couple of neighbors came over to visit. According to Auntie L (who was eleven at the time…for what it’s worth) these neighbors were lesbians and they forced Debra to bathe in front of them. This has made Auntie L hate all lesbians for the rest of time.

She stopped talking at this point and let the subject drop.

I glanced at Lyss to see how she was doing. We’d heard this story before, while Auntie L was cutting my hair several months before. She hadn’t dropped the subject quite as quickly that time.

I could tell from the look in M’s face that Lyss had shared with M the fact that A has a girlfriend.

M asked of Auntie L knows that Lyss has a girlfriend.

I said, “No, I don’t think she’s ready to know.”

M suggested that maybe knowing would make her ready.

And maybe she’s right.

But maybe Lyss isn’t ready to be the post child for lesbians and be the one to make Auntie L rethink every single bias she’s ever had concerning lesbians and bisexual people for the past fifty plus years.

Honestly, to me, this isn’t about Auntie L and her issues, it’s about letting Lyss feel safe. It’s about protecting her and letting her set the tone for when she comes out, to whom she comes out and how far out she’s willing to be at any point in her life. These are not my choices. These are her choices.

And I support them.

While sitting there, I did tell my cousin E about Alyssa and N. We’d shown off Lyss’s homecoming dress and E asked if Lyss was going with a date or if she was going with a bunch of friends.

I told her Lyss was going with a date and then told her about N. I asked Lyss to let me show E a picture of her and N. E was very supportive and asked if Lyss was okay with what Auntie had said.

Lyss confirmed that she was fine.

After that, my mom came over and asked Lyss if she’d found an N charm for the bracelet all the girls were making. We’d found each girls’ own initial but when my mom offered to look for an N for Alyssa, that helped. My mom has had a hard time accepting N but when faced with blatant homophobia, she comes through and for that I’m proud of her and appreciate her.

I will continue to let Alyssa decide when and how she wants to talk about her relationship with N. I will support her however she needs, up to and including telling off a beloved Auntie if that’s what Alyssa needs from me. We keep the lines of communication open and talk about this stuff as much as she wants/lets me. We’re still figuring it all out but at least we’re on the same side…always.

Tuesday, September 18, 2018

5p- At Almost Twelve

Now, I know we’re not a typical family living with 5p- syndrome. I get that. I acknowledge how lucky we are.

But we continue to live with our version of it.

And it’s not always easy. I am very aware that it could be and is so much worse for a lot of other families out there but knowing others have it worse doesn’t necessarily make things easier for us. You know?

So here we are. She’ll be twelve in November. She’s in fifth grade. She’s so funny and sweet and smart and stubborn and sometimes frustrating.

At home she loves her tablet, she loves running and letting her dad swat her with a fly swatter. She would prefer it if we’d just still spoon feed her breakfast, lunch, and dinner. I refuse, but some days, Tom feels like it’s just easier. Honestly, it’s laziness on both their parts. Liv doesn’t want to do the work of spooning food into her own mouth and Tom doesn’t want to do the work of fighting with her to spoon the food into her own mouth.

Some days, I’ll fight the fight, urging her over and over to just eat her food. Other days, I figure if she’s hungry enough she’ll eat. If she isn’t hungry enough, well, there’s always another meal in a few hours. The child is not going to starve to death.

At eleven years and ten months old, she’s almost 5 feet, 3 inches tall and weighs around 105 pounds. So yeah, not gigantic, but not to the point that missing one meal or hell, just part of one meal is going to lead to her being hospitalized due to starvation.

So that’s happening.

She’s sleep well these days, thank you Lord. I’m so very grateful for that because when my kids sleep well, I sleep well. At one point over the summer, she was waking me up consistently at least once, sometimes twice a night. I let this happen for about four nights before I had a little talk with her during the light of day. I reminded her that night time is for sleeping and if she wakes up and sees that it’s still dark, she should just roll over and go back to sleep. She should NOT wake me up because she’s lonely. I told her that if she was sick, as in throwing up or in a lot of pain, she could wake me up and tell me. But if she can’t find the book light or ball or turtle light she sleeps with, well, I am not getting out of bed to help her find one of those things. She can wait until morning.

After that talk, she hasn’t woken me up again. So I’m checking off the box beside, “Mature enough to understand that Mom needs her sleep more than Liv needs her book light.”

Each fall, right before school starts, we reteach her how to tie her shoes. She wears flip flops all summer and just doesn’t care enough about tying her shoes to remember the process. I mean, why should she when she’s got parents who will teach and teach and teach it to her and then, when she takes her sweet time doing each morning, will just tie the damn things herself?

There are a lot of things I know Liv is capable of but that she either doesn’t want to do or that we don’t bother making her. I know we’re doing her a disservice and I’m working on that.

At school…her teachers are amazing. She is in the mainstream class for science and social studies. She’s in a smaller class with an aide and a special education teacher for reading and math. She joins the other fifth graders for gym, technology, art, music and media center. She doesn’t seem to mind school but I don’t think she particularly enjoys it.

She doesn’t have what I would call friends. She knows everyone, everyone knows her. Everyone is kind but since she still doesn’t interact with her peers, she simply can’t make friends. Right now, it doesn’t seem to bother her. She seems to think her peers are weird and annoying. But honestly, if she’s lonely, how can I know unless she tells me? She’s not very good at naming her emotions, though we’ve used the movie Inside Out to help her figure out what she’s feeling.

The emotion she expresses most often is joy. And for that I’m grateful. I want her to know joy. I want her to know contentment and love and happiness. I want her to have friends, though, too. I want her to feel like she fits in. I worry about loneliness and feeling left out.

We spent time with my nephew who is ten and a cousin’s daughter (sort of like a niece, right?) who is nine. Olivia had a blast with them. Stella, the ‘niece’ is what her mom describes as weird too. She’s very intense, very mature for her age and so very serious. Jaxon is so very much a typical ten year old boy. He kind of bridged the gap between Olivia and Stella. They seemed to have a blast on Sunday afternoon. They all got so dirty and that actually made me happy because Olivia isn’t usually one to play outside in the dirt and neither is Stella. Those girls needed that boy to teach them how to play.

All of this is why we continue to push for Olivia to have as much time with her typical peers as possible. She watches them and I definitely think she’s learning from each interaction, even if she doesn’t appear to be doing so. She takes it all in and I hope she’s learning to read tone of voice, facial expressions, conversational give and take. She does all this with Jaxon but she’s been with that kid her entire life. I want her to learn to do it with others beyond her very small circle of family. These days, she will talk to me, Tom, Alyssa, my mom, my step dad and Jaxon. She’ll have actual conversations with all of us, give and take, telling stories, listening to us, asking questions, waiting for answers but for others? This doesn’t happen.

She will whisper to her teachers still. Her aide, a woman who has been working with Olivia for several years, has the most luck getting her to converse with her. But new people are tough for her. She does love to go to school and tell her aide, teachers and therapists stories about what happens at home, so…we have to be careful at home. Ha! Not that there’s a lot of craziness happening at home, I mean, we’re seriously boring people.

I think the older she gets the bigger the gap between her and her peers gets. I don’t really let it bother me that much, honestly. I mean, she’s my girl, I adore her (even when I’m exasperated by homework sagas, food issues, a puddle outside the bathtub, etc.) She’s so joyful and so much fun to watch and listen to. So she’s not your typical fifth grader, so what?

My mom notices, though. We go to football games together. Obviously not to watch the actual football game but to watch Alyssa in the marching band. While there, though, my mom will notice Liv’s classmates and how mature they are. These kids are running around, nowhere near their parents, helping with water for the football players, helping with littler kids, etc. And my mom sees what Olivia is not doing.

I don’t take Liv to these games because she’d hate it. She’d be insanely bored and would drive me nuts asking over and over when we were going to leave. She doesn’t want to run around with her peers, playing catch with a small football, watching the cheerleaders with the idea that she might someday be one of them. She doesn’t want to go just to see and be seen. She doesn’t care about that stuff and I’m okay with that.

I see Olivia for who she is. I try to celebrate her joy, he laughter, her very life. I can’t let myself fret over what she’s not doing. That’s not fair to her or to me. It will just steal the fun of everyday life with my littlest sweetheart. How is that fair to anyone?

Monday, September 17, 2018

I Blame the Salt

I threw a mini tantrum in the shampoo aisle of Walmart this weekend. My tantrum then extended from the shampoo aisle to the register where I vented to the poor woman who was just trying to do her job.

See, I hate buying water softener salt. I hate trying to remember to pay for it at the register, I hate lifting the heavy-ass bags from the skid into my cart, I hate lifting them from the cart into my bag. I hate it. I hate everything about it.

Guess what Tom wanted me to buy at Walmart this past weekend?

Shoes. And water softener salt.

The shoes are bad enough. But having to buy the damned salt pisses me right off.

I wonder if he’s forgotten that Walmart lets men shop. They let them buy crap.

No, he’s evidently forgotten.

So there I was, already annoyed because I was in Walmart on a Saturday afternoon and people in Walmart on a Saturday afternoon are insane. They’re insane and stupid, which means I’m usually raging by the time I get out of there.

We were in the shampoo aisle because apparently, Alyssa needs seven thousands bottles of shampoo in her shower at all times. And her hair is delicate and she needs to try new shampoos constantly to try and find the right combination of smoothing formula that won’t make her hair feel greasy. Ugh.

We were almost done but I’d suddenly remember that Tom had added to my list and I hadn’t read beyond the first item, which was size 11 wide shoes. Yes, he has me buy his shoes because he only ever wears black, size 11 wide shoes. My eyes were rolling right out of my head but I wasn’t stomping my foot…not yet.

I pulled the list out of my purse and read beyond the shoes.

Water softener salt, two bags, clean and protect.

I was instantly enraged. I hissed, “Water softener salt! I HATE buying softener salt.” Then, because I’m all mature and stuff, I stomped my foot. If I could have gotten away with it, I probably would have thrown myself to the floor and wailed.

I was so furious I could barely see straight. Olivia was in the middle of one of her never ending stories about Mush Mush and Katherine and some fingernail saga and I had to say, as calmly as I could muster, “Liv, I’m so mad right now, I can’t listen to your story.”

And guess what? She shut right up. I’m pretty sure she knew I wasn’t mad at her, but she seemed to sense my rage and decided the story could wait. There is always another Mush Mush and Katherine story.

When we got to the register, after going back to the shoes and selecting a pair of size 11 wide, the nice lady running register 7 greeted me and asked me how I was doing.

“Fine,” I said as pleasantly as I could. And before I could stop myself, I muttered to her, “I’m just mad at my husband because he wants me to buy water softener salt and I hate buying water softener salt.”

She started to pull out her salt cheat-sheet and I stopped her. “Oh, I don’t want to pay for it with this,” indicating the groceries on the belt. “No, it needs to go with those shoes at the end. Because heaven forbid he buy his own shoes.”

Yes, I said that. To a stranger. Poor lady. To her credit, she didn’t pause in the scanning of my groceries. Heck, she probably sped up just to bet me and my anger out of her space.

Once we were done with paying for both the groceries and the shoes and salt, I apologized to the cashier, “I’m so sorry for my attitude.”

She smiled and said, “It’s no problem, I think most of us women get it.”

I returned her smile and then headed off to heave the freaking salt into the extra cart Alyssa had fetched while I was checking out.

Lyss lifted one bag of salt into the cart and I got the other. When we got to the car, she offered to get them out of the cart but I was in total martyr mode and gently (seriously, I was gentle, I wasn’t mad at her!) suggested she just get in the car.

The entire drive home I fumed. I told myself that I actually hoped Tom wasn’t home so I could schlep the damned salt to the basement and fall and break my neck because that would sure teach him, wouldn’t it?

I know, I’m so very mature.

When we got home, he was there to he’s the one who dragged the salt from the car to the garage floor and then later took it to the basement. No broken neck for me, sigh.

He asked me how I was and I told him I was having a tough day. I was annoyed because people in town are stupid. I hadn’t mentioned the salt yet, but give me time, it was early in the day.

We put the groceries away and when I went to the bathroom, I noticed how hideous my hair looked. It was truly tragic. That pushed my mood from irritated all the way to maudlin. I was a wreck.

Tom asked again how I was. I told him I wasn’t very happy. I told him about my horrible hair, though why I needed to was beyond me, I mean, the man was looking right at me.

He said it was fine. He’s blind and maybe a little dim.

I told him it wasn’t fine, it was awful and while I know how lucky I am to even have hair, I reserve the right to hate it at times. And this was one of those times.

Then, in a moment of pure honestly, I admitted that part of the reason my day was so very awful was because I’d had to get softener salt.

To give him credit, Tom looked just enough abashed to make me feel better. I hadn’t wanted to say anything because I know I was being stupid and petty and immature. I didn’t care, I don’t want to EVER have to buy water softener salt again. He was going to his brother’s the very next day. He has to drive past all the places the sell salt on his way. He could have taken ten minutes out of his flipping day to buy the salt himself. I don’t care if I was already IN Walmart, I didn’t want to get the salt.

I ended up going to my room, turning on the fan, taking off my pants (TMI?) and laying down for about an hour and a half. I’d left my phone in the living room and closed the bedroom door. I dozed a bit but mostly, I rested, trying to reset my mood.

It helped a little, thought my hair continues to be horrendous. But I knew a little nap wasn’t going fix that. Time is what that’s going to take.

I don’t know if my little moodiness will get me out of buying softener salt ever again, but I can certainly hope. Maybe next time I should try using my words instead of stomping my foot in the shampoo aisle, though.

For what it’s worth, I did apologize to both Lyss and Liv for all the horrible things I said about their dad while in Walmart and in the car on the way home. And after I apologized for the words I’d said, I apologized for the things I was still thinking.

I like to think I’m a work in progress.

Sunday, September 16, 2018

Teenage Love

Remember when you first met your significant other? How new and wonder that person was? Remember how you wanted to spend every waking moment with them? How you counted down the hours and minutes until you could be with them again?

Yeah, me neither.

But we’re in the throes of that right now with teenage love.

Bless their hearts but I’m so over it.

I’m over her asking to go somewhere every single day, or to have someone (you know about whom I am speaking) over to our house.

This week has been rough for all of us.

But FAIR WEEK is the constant excuse for the constant asking if she can go out and stay out later than we usually allow on school nights.

There haven’t been any tears but that’s probably because Tom and I are pushovers and we’ve given in on just about everything. So yeah, this frustration is probably our fault but that doesn’t make it much easier to swallow.

After her being late two nights in a row, she still asked to go to an event on Wednesday. Fine, whatever, but DON’T BE LATE. I even told her that if she thought she was going to be late, she needed to call me and I would come get her to avoid the stress of her being late.

She was right on time. As in, she was supposed to be home at 9:30 and she walked in the door as exactly 9:30. Sigh.

Tom and I agreed to the event on Wednesday with the stipulation that she wasn’t doing anything, going anywhere, etc. on Thursday.

Thursday morning dawned. She rolled out of bed at 6:45, arrived down for breakfast at 7:00. At 7:10, as she was heading back upstairs she asked all casual-like, “I know you told me that if I went last night I couldn’t go anywhere tonight but N has to be at the fairgrounds at 6:00 so can I hang out with her until 5:45?”

I didn’t say anything. I was not this kind of teenager, who asked and asked and asked for more. I didn’t push mom.

Let me insert here that she’s a good kid. She’s mostly kind and sort of helpful. She might vacuum once a week, if I ask her to do so. She’ll do the dishes when we tell her. She isn’t mean to her sister. She gets good grades but those come easily for her and so I can’t say she works hard for them. She’s talented, she’s smart, she’s mostly sweet. But she’s also a teenager and teens are very self-centered. I won’t say she’s selfish, but she definitely wants what she wants when she wants it.

Tom finally replied to her question. He had something going that afternoon that meant he needed Lyss at home to help with Liv if he had to leave. We rarely leave the girls home alone but as she often points out, Alyssa is fifteen years old. She’s perfectly capable of being home alone with her eleven year old sister for a couple of hours if necessary.

She took the news well that we needed her to be at home. In fact, she rolled with it and immediately suggested, “Then can N come over here until 5:45?”

She’s a sly one, that girl. I mean, why not ask? If she doesn’t ask, we definitely won’t offer the option and that’s as good at not seeing her girlfriend for a whole twelve hours until the next school day. Heaven forbid!

We gave in, AGAIN, and told her it was fine. I mean, what does it harm?

I did tell Olivia that she is babysitting her sister as much as her sister is babysitting her. I told her to be as annoying as she could and that if A and N went upstairs, she (O) should definitely follow them and not give them a moment of peace. I mean, she’s the little sister, that’s kind of her job, right?

Okay, so maybe it wasn’t nice of me to give Liv those instructions but this past week I’m finding parenting a teenager to be a lot of work and I’m tired. I’m so very tired. I’m tired of watching for headlights each night, I’m tired of staying up later than I want because she’s not home when she’s supposed to be home. I’m tired of watching the clock. I’m tired of having to even think about whether she can go somewhere and when she should be home versus when she WILL be home. Like I said, I’m tired.

Are these the years that make us glad when they graduate and move out? Do they get like this so we will push them out of the nest rather than hold tightly to them and crush their independent spirits?

I don’t know but I think maybe. Maybe.

Friday, September 14, 2018

Building Endurance

So I’ve completed four weeks at my new job.

The first week, I was tired. So tired. So very, very tired. I went to be each night at 9 and slept until 6, not even getting up in the middle of the night to pee. I’m 47 and have had two kids, that’s saying something.

My back ached that first week at work no matter what I was doing. I could have been sitting down at the computer, or standing up filing, or stuffing envelopes. It didn’t matter, I hurt. I ached because some of my muscles weren’t used to not sitting in a recliner for hours at a time.

You know the scientific saying about inertia? The one that says that objects in motion stay in motion, blah blah blah?

Yeah, that one. Well, while I was at rest, I wanted to stay at rest.

But I’m building endurance. I’m getting stronger.

I can stay up until at 10 most week nights. I still sleep pretty much through the night but I’m not so tired I can’t keep my eyes open past 9pm.

My body doesn’t hurt like it did that first week. I’m already stronger. I’m used to sitting in a regular chair or being on my feet.

If my old job hadn’t been eliminated (it was sent to England…hip hip cheerio) I would have worked through chemo and radiation. I would have kept moving and stayed strong. Sure, I’m glad I got to spend the summer with my girls but there’s definitely something to be said for staying in motion.

I’m so grateful for this new job, this new lease on life. I’m still tired sometimes but I know that I’ll keep getting stronger, keep building endurance and keep living. That’s the whole point, right?

Wednesday, September 12, 2018

How's My Hair?

Okay, so it’s been 27 weeks since my last chemo. My hair has been trimmed twice by Auntie Lorry. I colored it about eleven days ago. So much better. At least I think so and I’m the one who has to look in the mirror each day, so there you go. I would say that about 90% of people, even when not asked, would tell me that they’d keep the white/gray hair if they were me. The other 10% told me that they got it, they’d dye it too. I love those who embrace aging and all the signs, go you! But I can’t, not yet. Someday, maybe.

Since I have neglected this place and not updated weekly as I once said I would, here are the last many weeks of How’s My Hair Wednesday pictures. It’s kind of cool to see them all in one place, to see how far my hair has come.

I’m grateful for the growth but reserve the right to complain about it as much as I want. I know how lucky I am but am still able to appreciate the horror that is my hair some days.

Here we go from thirteen weeks post chemo to now:








Tuesday, September 11, 2018

A Year Ago Today

I know, I’m tired of this too but I can’t seem to stop my brain from thinking about where I was and what I was doing/going through a year ago in this day and that day and the other day.

Last year I dragged my six days post-surgery body to the county fair. I didn’t ride any rides except the Ferris wheel but I did walk around the place, watched Olivia ride rides with her sister, sat through the band performances and went home and slept as hard as ever.

My hematoma was hard and painful but the incision itself wasn’t too bad. I was bruised and battered and still reeling from the cancer diagnosis.

But I went to that damned fair because I was determined to keep living. I knew the coming months would be hard and I wanted to live. The whole point of treatment, of the surgery, the chemo, the radiation was to live and I didn’t want to put my life on hold while I fought to live.

So we went. And it was fine. I didn’t rupture anything or bleed more. I think getting out of the house that day helped. I didn’t and still don’t want to feel sorry for myself.

Yesterday, we hit up the fair again, this time after work, since…see yesterday’s post. This time, I rode the rides with Olivia while Alyssa hung out with her friends and prepared for her performance with the bands. It was fun.

Liv and I had a blast. We rode the Berry Go Round twice, once in a blueberry and once in a strawberry. After our Berry Go Round rides, we headed to the stands to watch her sister toot her flute. Liv was bored but honestly, so was I. Lyss’s band was the third in six that performed. They were awesome but waiting for her to perform and then sitting through those who performed after was boring. I’m there for my kid, not everyone else’s. I know, bad village mom. Whatever.

After the bands, we got some fair food because, duh. Liv got a cup of fries, I got some chicken tenders to share with her. We shared a Pepsi (isded, as O likes to point out) and I learned that colas still taste nasty.

And you know…if the one lasting effect of chemo (besides the awesome one of no more cancer!) is that I have a weird aftertaste when I drink Pepsi or Coke, well, I’m pretty damned lucky. I avoided the neuropathy. My hair grew back. I’m here. I can forgo colas for the rest of what is hopefully my very long life. I’m healthier for it anyway so I’m going to go have some cotton candy now.

After we ate we headed back to the rides. At first, O and I waited in line for the Ferris wheel. While we waited, they carney dudes let all the riders off and then…one of the dudes, the slightly younger one, grabbed a couple of wrenches and started climbing the wheel. I looked at Olivia and said, “We don’t really want to ride on this thing after he’s ‘fixed’ with a wrench, do we?”

She agreed that it seemed like a bad idea to climb aboard this ride and we headed to the scrambler instead. We both laughed so hard during our first ride as she slid into me over and over again that we decided to ride it again. After that, we were out of tickets and so headed back to the pavilion to find my mom. We were home by 8:45, just in time for Liv to have a shower and get her hair washed. It had been over a week since we’d had softened water. Her hair had been washed several times in that week but with nasty, hard water. It was icky. After her shower her hair felt so much better, as I’m sure, did she.

I’m so very grateful to have this time with my girls. To be able to look back on the past year with gratitude and joy, to know that this fight has been worth it. Even if the fight isn’t over, it’s worth every battle, every journey, every tear for moments like last night.

Monday, September 10, 2018

Fair Day

The girls don't have school today. Every Monday after Labor Day, all schools in Williams County, Ohio, are closed so the kids can go to the county fair. Yay, Fair Day!! There are discounts on wristbands for riding the rides, there are goats, pigs, cows, rabbits, and horses. There is face painting and cotton candy. It's a fun day.

Every year since we've lived here, I've taken the day off to spend with the girls at the fair.

This year, I won't be doing that because I started a new job four weeks ago and I don't have vacation time yet. But it's okay. My mom will be doing the Gram thing and taking Liv to the fair. They will ride the Blueberry ride (it's like the Tea Cups except the cars are shaped like blueberries and strawberries, it's Liv's favorite ride) and they'll buy cotton candy. Because Lyss will probably not be with them, they will not visit the animals because, duh, we all know how Olivia feels about animals.

I will get home at 5:00 and O and I will head back to the fair to watch Alyssa and her band mates perform. This, too, is an annual thing. It will be fun, but don't ask Olivia her opinion because she will declare it is boring. I will bribe her with food.

Last year, I dragged myself to Fair Day even though I was six days post-surgery. It was important that I keep living, keep doing all the things. It's still important but sometimes, life gets in the way of living, you know?

Next year I will have been at my job for a year. Next year I will take Fair Day off and spend with my lovelies. Until then, we'll just keep on keeping on.

Sunday, September 9, 2018

Ugh, Football

Anyone who knows me at all knows that I don’t particularly enjoy sporting events. I don’t enjoy participating and I don’t enjoy watching. I will endure a track meet because my child participates and I do enjoy watching her. But high school football games? Save me.

Why do I bother, you ask? Again, it’s because my child is a participant. Not in football, of course. That would just be weird. Though if she wanted to play high school football, I would do what I could to make that happen for her. But that’s a whole other topic.

No, she’s in the marching band and they perform for the pre-game and the halftime at football games. And because of this, I drag my tired butt to the field, a whole three-ish miles away from our house, pay $6 to watch her toot her flute (she actually plays the piccolo during marching band but toot her flute sounds funnier) for five minutes, sit through what is supposed to be twenty minutes of football but is ALWAYS over an hour until halftime and I watch her for another ten minutes.

It’s totally worth the six dollars and the time because it means the world to her. My mom and I are both usually there and we’re both bored out of our minds during the actual playing of the football but we endure because we love Lyss.

Tom loves Lyss too, but he loves being home and excuses himself by insisting that Liv, who hates any sort of extracurricular activity with the heat of a thousand suns, should be able to just stay home and a parent is needed at home with her.

I say she’s old enough to be told, “You’re going, you’re behaving the way you know you should and it will be over before you know it.”

But it’s not the hill I’m willing to die on, so my mom and I go. Liv and Tom stay home and I always “forget” to tell my dad that I won’t be at home on game nights so Tom has to visit with him for the ten minutes it takes to tell my dad I’m not there. Is this cruel and unusual punishment? Maybe, but considering the time I put in at the football game I figure it all evens out in the end.

Friday, September 7, 2018

Meanwhile, Life Keeps Happening

When I’m not sitting around symptom spotting, life goes on. Alyssa has a Homecoming dress, Olivia has homework that needs to be nagged to death in order for it to get done, there are dentists to be seen, the floors need to be mopped and laundry is at a constant level of tragedy.

But seriously, those dentists. Liv has had three appointments in the last six weeks with her dentist (yes, the girls each have their own dentist…what do you mean your kids don’t see different dentists?) The first visit was to have five baby teeth pulled in preparation of orthodontics which may or may not happen in the next year or so. The second was a cleaning that was a couple of months overdue. This last one, that took place on Wednesday, was to put sealants on some grooves she has in order to prevent future cavities.

Yes, Liv’s dentist loves us.

Speaking of people who love Olivia, I got an email from her teacher the other day. I suppose this is a record. It’s the first email of the school year and we’re four whole weeks in.

Her teacher was sharing her concerns that Liv isn’t working independently on things like spelling and reading. These are subjects that are usually fairly easy for Olivia, so when she’s fighting even those, we worry.

I talked to O myself, trying to figure out what’s up with her. It’s like pulling teeth to get answers from her. She shrugged and said, “Spelling is boring. I read the book my teacher told me to read but I didn’t like it, so I didn’t read it all.”

Yeah, she’s a stubborn little wretch. She’s also smart enough to just stare blankly at her teachers and aides and that sometimes gets her out of doing the work…at school. Sadly for me, that means the work gets sent home where I have to badger her sometimes to the point of tears to get the work done. Sigh.

This girl…she just wants to do what she wants to do. Why are all the adults in her life so obsessed with things like reading, math and spelling? Life would be so perfect for her it we’d all just shut up and let her watch YouTube and play games on her tablet.

Alas, we’re evil and want her to be able to do basic addition and subtraction. We also think she should be able to tell time using an analog clock. There’s also that whole reading comprehension thing. YouTube comments doesn’t count when it comes to daily reading requirements. Damn it.

Thursday, September 6, 2018

Nothing

Anyone who has any sort of health crisis, whether acute or chronic, knows that once something serious happens, it’s hard to get back to the point where ‘it’s’ nothing. It’s always nothing, until it’s something.

And once something occurs, you’re never comfortable accepting that ‘it’s probably nothing.’

Yet, it really might be nothing.

Except when it’s something.

Honestly, nothing is going on with me. I’m fine. I just think about all that could be happening inside my body now that I’m six months out from chemo and all the poison is probably out of my system. As long as the chemo was still coursing through my veins, I could take comfort in knowing it was killing any residual cancer cells that might be thinking about growing again. But…the chemo is gone. And cancer grew once. Why should I believe that it won’t grow again?

I know these are the ramblings of the paranoid. I know this. I should trust my doctors and know that they’ll keep an eye on me.

But only I am there at midnight when Leftie is feeling weird. I’m the only one who aches from not being active enough and yet wonders if maybe those aches mean more than just getting older and being fat and lazy. I am the only one there to think about my girls and how no one, not even their lovely father, will ever love them like I do and what if the cancer comes back and we don’t catch it in time and I lose this battle that started last year? My doctors aren’t here every minute of every day. And honestly, I don’t want to bother with them with things that are probably nothing.

Except they might be something. And since I’ve experienced ‘something’ I worry.

Maybe I need to see a therapist. Maybe I have PSTD from everything that’s happened in the past year.

Maybe I need to just chill and be grateful that I am still here and know that if there is more to this battle, I will fight it with everything I have, until I have nothing left, if necessary.

Wednesday, September 5, 2018

Anniversaries

All the dates of the past year, the day I got my diagnosis, the day of my surgery, my first chemo, the day I started full-time medical leave, my last chemo, my last radiation, those dates are all rolling around in my head.

Of course they are. They signify when my life drastically changed. And yet, here I am, a year to the day after surgery to remove that 7/10 inch tumor. The surgery that left me free of cancer but with a hematoma that was huge and painful and lead to another surgery five weeks later to remove it.

I’m good.

I’m also changed from who I was a year ago. Who wouldn’t be, right?

I’m so tired of thinking about cancer. I’m so tired of wondering if the heaviness of my left breast is just remnants of surgery and radiation or if it’s something else, something more ominous.

There have been times in the past couple of months where I wish I’d just had a mastectomy instead of a lumpectomy. If I’d had all of Leftie removed, well, if there’s no breast tissue, there’s no chance for the cancer to come back in that area.

I don’t know.

It’s a weird place to be. I’m healthy…except if I’m not.

Each date that comes and goes is a good one. It means I’m still here, still checking off the days, still doing homework with Liv and going dress shopping with Lyss. I’m still figuring it all out but am grateful that I get to do that. The alternative is unacceptable and yet very much there, on the fringes of my life, reminding me that I’m lucky but I might not always be.

Sunday, September 2, 2018

Dresses

There's this little used dress shop in a town about forty minutes north of us. We've been there a few times over the past few years, looking for dressed for Lyss to wear to dances. We found a dress for the Jr High formal when she was in eighth grade. We found her dress for last year's Homecoming dance as well as prom. See, I told her last year that when she's a junior and a senior, I will be willing to pay full price for prom dresses but as freshman and a sophomore? Nope, not going to fork over hundreds of dollars for dresses she will wear one time. I suppose I'm mean but, well, it's a valuable lesson, right? Right.

Yesterday we headed up to visit Sassy's Closet again, hoping to find something for her for this year's Homecoming dance. It's in October, so I thought we were getting a jump on things.

We pulled into the parking lot and saw the sign that stated that Sassy's closet is going out of business. Huh. Well, then.

We went in and started looking through the racks. Alyssa announced she'd seen every dress hanging there.

Olivia hadn't seen them all, though. She found a beautiful periwinkle dress that is very much in the shape of a mermaid. She asked if she could try it on. I knew the style was too mature for her but figured it couldn't hurt.

She looked adorable in it but it was a little big and way too long. It was also very much too mature. Alyssa, though, once seeing this dress on her sister, decided that perhaps she should try it on too.

While Lyss was trying on what we dubbed the Mermaid dress, Liv found a bubblegum pink dress that she declared would be the perfect dress for her to wear for Halloween as Barbie. She asked if she could try this one on too.

I knew the pink dress would be too big too but my mom is excellent with a sewing machine so we took a chance. She was ecstatic. It was so perfectly Barbie pink.

Yes, again the dress was too big but not so much that it will look weird if my mom takes it in a bit. She will also add straps to it to make it more comfortable for Liv.

We left that shop without a Homecoming dress. But we didn't leave without a dress at all. We walked out with Alyssa's prom dress for this year's prom and with Olivia's Halloween dress.

I'm not posting a picture of Lyss in her dress, for fear her date will read this and see it before the big night. But here is Olivia in her Barbie dress. She's in love.

Friday, August 31, 2018

Back At It

I think I’m getting my groove back. I’m trying anyway.

We’re back to our regularly scheduled programming. Even though I’m working for a different company, my hours are the same as they were for the past eighteen years. I leave just before the girls get on the bus, I get home at 5ish, I work Monday through Friday.



I help Liv with her homework each day when I get home. On the bright side, I’ve only made her cry once since we started our homework sessions a week and a half ago. On the other hand, I’ve made her cry once during our homework sessions. I try so hard to remember that she’s not being difficult on purpose but in the moment, it’s so frustrating.



I often just want to do the work myself but I know she won’t learn anything if I do that. She’s so smart, it’s just so hard to get her to show it. Her teachers are amazing. They reach into her (figuratively, duh) and find ways to connect. But I know she can frustrate them too. Last week we got a note home suggesting that she wear her gym clothes to school rather than take them and change while at school. Apparently, last Friday, it took her thirty (30!) minutes to change from her gym clothes back into her regular clothes. She only has gym two days a week so I’m good with sending her in clothes that might get sweaty that day. Apparently, fifth graders are supposed to be self-sufficient enough to change from their regular clothes into gym clothes and back again each day they have gym class. Ha!



When I asked Liv what took her so long when changing, she informed me that the bathroom where she changes (as in, she refuses to change in the locker room with the other fifth grade girls) there were too many other kids who wanted to use the actual toilets and she had to wait for a stall in which to change. Huh. Her aide and I (we communicate via direct messaging on FB) were skeptical as to this excuse. But what do I know? I’m not there.



Liv gets herself dressed each morning and it takes her less than five minutes. But like I said, she’s smart and she hates gym, I wouldn’t put it past her to take her sweet time in changing just so she can miss half the class. I’d have done it too back in the day if I’d thought of it and thought I could get away with it. She’s a smart cookie and tends to be a little sneaky, is what I’m saying.



Lyss tried out for the school play yesterday. I’m so proud of her for doing this kind of thing. It took me until my senior year to be brave enough to do that.



School is in full swing. The first home football game is this coming Friday. I don’t actually enjoy high school football so I will just go in time to see the marching band’s half-time show. I still pay full price to get in for all of fifteen minutes, so the school is getting their money and I save myself some boredom. Sorry parents of kids who play football, it’s just not my thing. Heck, to be honest, I don’t really enjoy track meets but I go because my kid runs/jumps. I stay for the whole thing to, because, well, because it’s not quite as boring as football. *shrug*



Since Labor Day weekend is considered the end of summer and the beginning of fall, I will be taking down all our outside summer decorations this weekend. Down will come the flags and up will go the pumpkins and black cats. I love the decorations of fall/Halloween even if I don’t enjoy the actual weather that fall brings. I don’t care if you get to wear sweaters/sweatshirts in the fall, I don’t like the cold. Whatever.



This working thing is tough to get back into. I have to work on my stamina. I can go to bed at 9pm and still sleep until 10am on the weekends. What can I say, I’m a sleeper. I’m doing okay with getting up at 6am on week days, though I will be the first to admit that I don’t actually enjoy it. I know there are people out there who like mornings. My husband is one of them, bless his heart.



I shouldn’t be surprised that not working for almost nine months would lead me to being kind of out of shape, tired, etc. I mean, add in cancer treatments and no wonder I’m having to rebuild my stamina, my strength, my will to get out of bed. I know that each week, each day will get easier and better. I have faith and know that I’ve done it before and I’ll do it again.



This is why I went through treatments, right? Because I wanted to get back to my life.



I’m so very lucky this is my life and that I get to live it.

Tuesday, August 21, 2018

One Year

One year ago today I received a diagnosis of triple negative breast cancer.

Yesterday I started a new job. Last week the girls started school.

Almost six months ago, I finished chemotherapy. Almost fourteen weeks ago I finished radiation.

I just spent one of the best summers of my life with my husband and my girls.

What does it all mean?

I want my cancer journey to mean something, to have some kind of impact on more than just me.

While in treatment, I believe I brought a bit if levity to the chemo room where I received my chemo. My surgeon told me that my positive attitude was a huge part of my healing. He has told me several times that I'm a pleasure to treat. That's something.

But what now?

What is my new normal? Am I even ready for a new normal? My left breast is still swollen and the scars still hurt occasionally. I'm definitely not ready for strenuous exercise and yet I need to lose weight.

I'm happy with my new job but I wonder if I'll be able to find a way to make a difference in the world of cancer treatment while doing my job. Am I even supposed to make a difference? Maybe this was all just so I could appreciate my family more.

I don't know.

What I do know is that I'm happy to be here. I'm happy to be healthy and on my way to being even healthier. I'm so happy to have spent the summer with Liv at the pool, with Lyss as she learned to drive, with Tom in the yard, in the house, just being here, living, laughing, loving.

Maybe that's what it all means, appreciating a long summer with my family, appreciating not hurting, learning to appreciate my body, scars, fat, flaws and all.

I guess maybe I'll spend this next year figuring it all out and finding my new normal.

Sunday, August 19, 2018

New Beginnings

School started last Thursday. Fifth grade and sophomore year. Two days in and well, I've had a few stressful thoughts as I try to fall asleep at night. On Friday Olivia mentioned that she sits alone at lunch. Sigh. I suppose as the kids get older, the more they gravitate toward the norm and my sweet Liv is not the norm.

I fretted over it. I prayed over it. And I asked her how she feels about it. I wanted to get her thoughts and feelings before I talk to her teacher and/or aide about it. She shrugged and said she doesn't care. She said on the first day of school a bunch of kids sat at her table. She said she doesn't want me to talk to her teacher about it. She just wants to see how it goes and if she sits alone, she says she doesn't care. I have to trust her. I have to let her navigate this as she wants. I hope she'll continue to talk to me and let me know if it does start to bother her.

I start a new job tomorrow. Perfect timing, right? This new job will start one day before the anniversary of my breast cancer diagnosis. How's that for coincidence? I started my last job on August 21. I got my diagnosis 17 years to the day after I started my last job. So I start this new job on the 20th. I like that it's not exactly on the same day. It let's me celebrate one day and ruminate on the other day. There should be a post that day about finding my new normal.

My new job is a little less responsibility than my last job and honestly, I'm relieved. I'm ready to work again but I'm also ready to let others be in charge more than I will be. I like being a helper and that's what this job will be. I'll kind of be the administrative assistant to several people. I can handle that.

I can also handle having an income again.

It will be good for me to have somewhere to go each day. I mean, I don't think I could handle spending the rest of my life sleeping until 11am each day. But it was fun for the past eight months or so. Wait, I didn't actually do that. I just did it sometimes.

I need to start moving again. I need to have a normal sleep pattern. I need to feel productive. I could only mop my kitchen floor so many times a week, you know? And while my family generates a lot of laundry, I still don't have enough to keep me busy every single day.

No, this new job is a wonderful thing. It came along at the perfect time and it feels good to be found worthy of hiring.

Here's to new beginnings for both me and my sweet girls.

Thursday, August 16, 2018

Notes From the Tooth Fairy

Several weeks ago, Liv had to have five baby teeth pulled. When we visited the orthodontist in May, he found seven that needed to come out. Before we made it to the dentist, Liv managed to get one of those seven out while eating some Dots candy. The other sixth tooth is hanging on by a thread and the dentist said it should just come out by itself. The permanent tooth is actually already in, the baby tooth is behind it. Liv is channeling Shark Week with those two teeth. The dentist did say that if it isn't out when we go back in a couple of weeks for some work on her teeth, he'll just pop it out. I might just go out and buy her some more Dots.


The dentist was kind enough to send O's teeth home with her so she could put them under her pillow for the tooth fairy. Olivia's pretty sure I'm the tooth fairy but she's willing to go along with the whole charade because she gets a lovely note each time she leaves a tooth under her pillow.

She doesn't even care about the money she gets, she is always anxious to read the note. This warms my heart so much. I love that she wants to believe in the magic of fairies and mermaids all things mythical. I mean, who's to say that mermaids and fairies aren't real? I'm not going to say that. Not ever.

If believing allows her to maintain her childhood even a little longer, I'm going to keep on writing those notes and leaving that money. I keep the notes for her too. I would like to figure out how to bind them into a book for her. It would be a great memory book for when she graduates from high school. Something, anyway.

Kids grow so fast. Let's let them be little as long as we can.

Sunday, July 15, 2018

Learning to Fly

This summer has been an adventure in all kinds of ways. First, it's been the first summer I've had off work ever since I've had the girls. We've taken two trips to Battle Creek, Michigan. Olivia and I have averaged at least one day at the pool each week, sometimes more (see last week when we went both Thursday AND Friday.)

It's also been the first summer that Alyssa has been gone more than home. She and N try to spend as much time together as possible, because, duh. N works, so they have to fit their time together between her work schedule.

And now...Lyss is learning to drive. She got her learner's permit yesterday (Saturday.) She's already logged over an hour of driving with me and today she's getting some time in with her dad.

She's pretty good, actually. I try hard to be calm and patient as I'm reminding her to come to a full stop at stop signs and to maybe slow down a little sooner when coming to an intersection. I also try not to grab the door handle when she's taking curves a little faster than I think she probably should.

She's growing up and I'm so glad for her. I want her to fly. I want her to soar as high as she can and do everything she wants to do. I want her to reach for the stars and follow her dreams. I want her to know she can always come home, she will always belong here, even as she's finding other places to belong.

This summer has been the start of the gradual pull away from the gravity of your family of origin for her. She's learning that she has a life that doesn't always include her parents. And that's okay. That's good. But yes, it's hard for me and Tom.

I remind Lyss often she she's still only fifteen.

She then reminds me that she's NOT twelve. She does this with respect and maybe a little exasperation. I get it. I get that she has to pull away a little now so that in a few years she'll be more ready, more confident as she pulls away, both figuratively and literally as she goes off to college.

The teenager years are years of growth, transition, learning to fly and learning to let go, for both the teen and the parents.

We've got this. We're helping her spread her wings even as we continue to pad the nest so if/when she falls, we're here to cushion the blow and let her try again.

Sunday, July 8, 2018

Best Compliment Ever

The other day, Alyssa told me that her girlfriend, N, said that I am the soccer mom for gay kids. She was referring to my black t-shirt that has the rainbow freedom flag on it as well as the rainbow shoes I sometimes wear.

I was flattered, to say the least.

But honestly, it's a fine balance for me. I don't want to make Alyssa's life about me. I want to be a support to her, an ally as she travels this journey called life.

I want her to know that I support her, that I want her to be happy, loved and safe.

We had a bit of a...struggle the other day. She didn't want to go away with me and Liv and my mom for a couple of days to visit an aunt of mine. See, this aunt had made some pretty awful statements about homosexuality a couple of visits ago. I'd tried hard to gently steer my aunt away from her horrible bias and at the time Alyssa said she was fine.

But this time, on the eve of our leaving for the visit (the aunt lives on a lake, so we stay in an apartment attached to her house and swim for days) Alyssa declared she was uncomfortable with staying with this aunt. She was worried that Auntie would make another horrible comment (she didn't) and she said that if Auntie knew about N, Alyssa was worried that it would change Auntie's feelings/thoughts toward her (Alyssa).

I wanted Alyssa to go but I also didn't want to force her into a situation where she was uncomfortable or felt attached, even unintentionally.

It was a tough few hours. There were tears.

In the end, it was revealed that Lyss wasn't so much against going to Auntie's house, she just didn't want to go for three days and nights. We compromised, and went for two days and nights. She was happy, I got to spend time with her and Auntie behaved herself.

At one point during the discussion, though, I told Lyss that I kind of thought that if Auntie knew about N, it might actually go further in changing Auntie's mind about homosexuality rather than changing her feelings about Alyssa. I told her that Auntie loves her and I don't think finding out she has a girlfriend could change that.

I followed that statement up with something along the lines of, "I am not suggesting that it is your place to change the world or even our small part of it. I am not asking you to come out more than you are ready. I want you to do that at your own pace. I want you to feel safe in your world, whatever that takes. If Auntie says something, I need to know how much you want me to defend both you and the ideal of bisexuality and homosexuality. I want to honor your feelings, your story, your place in this world."

We hugged it out and all is well again in the Ordinary world...for now. :-)

Monday, June 25, 2018

Where I Am

I'm home these days. I'm doing laundry and sweeping the kitchen/dining floor. I'm making Olivia breakfast, a snack, lunch, a snack, another snack, dinner, a snack, another snack and a bedtime snack. I'm reading and I'm sleeping until at least 10 every single day because I go to bed at 11 and then Olivia will come and talk to me until 12:30 each night.

My toes are no longer numb except the ring toe on my left foot, and that's only occasionally. I'm very sensitive to the sun but sunscreen helps a lot. Shade helps too. My hair has been trimmed twice now.

I'm taking Liv to the pool and we pretend to be mermaids.

I'm helping Lyss figure out how to 'teen' with sometimes difficult, over-protective parents.

I'm navigating a sense of uselessness (not all the time, just sometimes) as I face each day without a job, without a place I need to be.

I guess I need to be here. I am trying to embrace where I am right this second, my chance to parent my girls in the moment, on the spot. I'm trying to find a sort of zen in the here and now.

I've sent out a few resumes. I've had a couple of interviews. I want to figure out what I want to be when I grow up and where I need to be now that I've finished treatments and have the opportunity to start over. Do I want to go back into HR? Not really.

But this is a small community, I am going to have to figure it out soon and hope what I want meshes with whatever opportunities are available to me. I pray it all works out and that I am useful wherever I end up.

Sunday, June 10, 2018

Recovery

I had my last radiation treatment just over three weeks ago. My last chemotherapy treatment was about 13 and a half weeks ago. How are things so far?

Well, I can't drink Coke anymore. There is this awful chemical aftertaste and it's just gross. The dry mouth is gone but I still have a weird metallic taste in my mouth, almost like blood. Fruit flavored things, you know, like fruit and stuff, tastes good so I frequent McD's a lot for their seasonal Tropic Twist flavored Slushie. Delicious and refreshing and yay, not aftertaste.

The numbness in my fingers and toes has abated. I can put earrings in Olivia's ears without dropping both earrings and both backs in the process. I call that progress.

My hair is obviously coming back.

The burn on my incision that was so awful there at the end of the treatments is healed. No more seeping, no more redness. The scar from my port is actually taking longer to heal than the burn from radiation. So there's that.

I don't need quite as much sleep as I was needing there at the end of radiation. Sure, I still like to sleep a lot but I don't need to as much. Shhhh, don't tell Tom.

I'm good. I'm lucky. I'm blessed, if you will.

Wednesday, June 6, 2018

It's Wednesday...

Since I've missed the last bazillion How's My Hair Wednesdays...here are the last six weeks of pictures. It kind of shows the progression of my hair growth. I can no longer be considered follicularly challenged. I mean, it's still REALLY short but it's way thicker. My sprigs are on the verge of being bangs!! How's that for progress?











Monday, June 4, 2018

Something a Little Heavy

I'm learning to be an advocate. It's a tough road for me because I want to do this right.

Alyssa has a girlfriend.

This girl is lovely and kind and she makes Lyss happy. That's all I can ask of anyone. Alyssa seems to make N happy too so there's that.

At first, my mom was VERY resistant to the idea of Alyssa having a girlfriend. She just couldn't see how it was possible.

I told her (my mom) in no uncertain terms that we are supporting Alyssa, that we love her and she has given us NO REASON whatsoever to stop loving her. She's an amazing, smart, loving, talented girl who has caught the attention of another amazing, loving, smart, talented girl and together they are adorable. There is nothing for us to 'fix' or fret about.

My mom has come around, by the way. She realized she was being horrible for a quick minute and got herself together.

I have an aunt whom I love very much. She and her son lived with my mom and my and my brothers for several years after my mom and dad divorced and my aunt and her husband divorced.

This aunt is very loving and also VERY OPINIONATED.

She recently declared that all gay and lesbian people are perverts. Why does she feel this way? Because, according to my aunt, when she was a child, a lesbian couple lived next door to where she lived with her mom and siblings. These women allegedly touched my aunt and her sister (also my aunt but deceased since I was a toddler so...) Because of these two women and their awful behavior, my aunt has decided to condemn every single gay and lesbian person in the world.

I gently reminded her the pedophilia and homosexuality do not go hand in hand. I reminded her that more people are molested by straight men than anyone else.

She agreed with me that straight men can be pretty awful but went on a bit more about how the perversion of homosexuality is something she just can't handle.

By the way, the entire time she was saying these things, she was cutting my mom's hair and Alyssa was sitting across the room.

I turned to Lyss a few times and mouthed, "I'm sorry." And "Are you okay?"

I kept wondering how long I should sit there and try to gently argue with my aunt before I got up and left the room with my daughters.

At this point, I don't think my aunt knows that Alyssa and N are together romantically. I honestly don't care if she knows. Well, wait, maybe I do care. If she knows and was still spouting that stuff, it makes it worse. But it's still awful to say it at all, even if you think everyone in the room is straight.

I need to support my daughter. I need to advocate for her and fix as much of our little corner of the world as I can because I won't make her sit through a situation like that again.

I don't want to alienate family but I will if it comes to a choice between them and my child.

When we left, my mom apologized to us for her sister's words and attitude. That was something.

Alyssa said she was fine, she told us that she and N pretend to just be best friends when Lyss visits N's work because there are some awful people there too. I hate that they have to do that but understand they have to do what is necessary to feel safe.

Yeah...they have to do whatever it takes to feel safe. Even if it means hiding part of who they are. How fucked up is that? Our world is such a freaking mess.

Friday, June 1, 2018

Fourth Grade - A Recap

School has been out for a week. The last day of school was last Thursday. I now have a sophomore and a fifth grader.

Fourth grade started out rough for Olivia and her teachers and for me. While I was home in September recovering from surgery, I was 'invited' to attend two meetings to discuss Olivia and her lack of participation/cooperation in the mainstream classroom.

During one of these meetings, her teacher suggested, gently, of course, that perhaps Olivia is playing me.

I get it.

Olivia is very smart. She comes across as very competent and so when she flat out refuses to do something that a teacher or aide requests/requires her to do, it comes across as blatant defiance.

The thing is...Olivia has connection issues in her brain. She can desperately want to do something but if it isn't connecting, she simply can't do it. I've seen this myself at home when trying to help her with homework. She'll look at me when I tell her to do something and I can see that she's drawing a complete blank. She hears my words but they don't mean anything to her.

This is not a moment of playing me. It's just that the connections aren't being made.

We made some modifications to her schedule, put her in a class with a teacher who has a PhD in special education curriculum and about seven students in total and she made some major progress. There are a variety of ages in this class, from first grade to fifth. Olivia connected on a social level with the first grader. She grew so much that she actually played at recess with this child.

This reminds me of the fact that socially and emotionally, Olivia is about seven years old. She wants to connect with people but she doesn't know how.

Just this evening I lost my shit with her. And I shouldn't have. I apologized after but I had a moment where I looked at my eleven year old and I just wanted her to act like an eleven year old.

But she can't. Because the social and emotional part of her brain isn't eleven. It's seven and that's why she'd rather play with a first grader than the other fourth graders or even the fifth grader in her class. It's why she relates better to the fourth grade boys than she does to the fourth grade girls. The girls have all matured beyond Olivia and the boys. The boys are still silly little delinquents and enjoy bathroom humor that tickles Liv's funny bone.

She won a writing contest a few weeks ago. It was during Right to Read week at school. It was the second to last week of school. Because she's Olivia, no one expected her to read her short story to the rest of the students that school. But because she won the contest, the teacher who taught Olivia in second grade read the story to the student body while Olivia stood beside her. When she got home, Liv told me, "I was a totem pole while Mrs. P read my story." She was quite proud of her totem pole status. She was also very proud of her story. She stood beside me while I read it and then took it from me and handed it to her dad for him to read it. It was very creative and well written.

I am, obviously, very proud of her. She's come so far and while I know she has a long way to go, she's doing her best (most of the time)and that's all we can ask of her.

Saturday, May 26, 2018

Place Holder

I'm here. I'm just trying to adjust to life without daily doctors' appointments/treatments. I'll get there. I'm sorry for disappearing.

The girls are out of school as of this past Thursday.

I haven't started a serious job search yet.

I'm still in pain from radiation but it is getting better.

My hair is still growing and I've taken How's My Hair Wednesday pictures but alas, I've neglected this space.

I'll get there. I still have a lot to say and not all of it is about cancer or cancer treatments. I promise.

Thursday, May 10, 2018

How's My Hair - Weeks 8 and 9

Okay, so I've become a bad blogger. I'm sorry. Really. But I'm also REALLY tired and come home from each radiation treatment and go back to bed for about two hours before Olivia comes home because I want to have enough energy to get through the evening with her and her sister and if I don't sleep, I can't be there for them. So that's my excuse.

But tomorrow is my last treatment so there's that. Next week will be a recovery week for me, lots of sleep, lots of Netflix and then I'll get on that whole job hunting thing.

But for now, pictures of my hair. Both were taken on Wednesdays, so I have that going for me.

Wednesday, April 25, 2018

How's My Hair Wednesday (on an actual Wednesday)

Picture 8, seven weeks post chemo.

I feel like my hair actually looks better in person than it does in pictures. I might even be a week or two away from being willing/comfortable going out in public without a hat, which is nice because next week is supposed to bring warmer temperatures with it. So, yeah, it's time to put the stocking caps/beanies away and let my hair blow in the wind. Hahahaha.

So without further ado:

Friday, April 20, 2018

How's My Hair...Friday? Yikes!

So yes, radiation fatigue is a real thing. I'm apparently suffering from it. Which is my excuse for not posting How's My Hair Wednesday. But again, the picture was taken on Wednesday, so that's something. It doesn't take much to take a picture. Well, I do have to take the clothes off the hook that hangs from the door and then take the hook down but even that doesn't fatigue me that much.

But getting up and moving around? Yeah, pretty tiring.

Enough of that. Here's the seventh photo, six weeks post chemo (please ignore the fact that it says post-chemom...I blame the radiation fatigue.)

Sunday, April 15, 2018

Radiation So Far

As of Friday, April 13, I've finished 13 rounds of radiation. I have 20 more to go. That means four weeks of daily, Monday through Friday, appointments.

So far the side effects include redness at the site of the radiation (ie, my left boob looks sunburned) and tiredness. I'm not sure I'd call what I'm feeling fatigue but I am pretty tired these days. Now that I've finished my round of antibiotics for strep and an ear infection, I'm sleeping through the night. It's a novel experience and quite lovely. The side effects of chemotherapy made it pretty hard to sleep through the night so I'm loving not dealing with dry mouth, sinus congestion and several trips to the bathroom a night.

But even sleeping through the night doesn't take away my need for a nap in the middle of the day. I can sometimes go without a nap for one day but only for one day. The next day requires a nap to get through the evening.

All this isn't helped by the fact that it's currently track season. Alyssa has two track meets a week and anyone who knows me knows I don't like to miss her meets. I just feel like if she's going to put in the work at practices and compete in the meets, the very least I can do is make it to the meets themselves. So on Tuesdays and Fridays, I make sure I take a nap so I can make it to her meets.

Tom is still very supportive and loving. I do know how lucky I am that he's being so great through all this.

I don't think it's affecting the girls all that much. I still help Liv with her homework and as noted above, I'm still going to Lyss's track meets and spending time with her when she's home, which, these days, isn't as much as I'd like. But then, I suppose high school is the time when kids start spending less time at home so they can get us used to the idea of going away to college. I know these next three-ish years are going to fly by.

Thursday, April 12, 2018

How's My Hair Wednesday (Thursday Edition)

The picture was taken yesterday (Wednesday) but I didn't have a chance to post it. Radiation makes me sleepy and I still have fourth grade homework to do supervise and a teenager to pick up from track practice. Between all that there are so many naps to take.

Anyway, here is picture #6 taken five weeks post-chemo.

Sunday, April 8, 2018

Out of the Mouths of Babes

Last weekend (Easter weekend) my mom invited me and the girls over to her house on Good Friday to dye eggs with Jaxon, Connor and Sabella, my cousin's daughter.

This was the first time Sabella saw me without a hat since losing my hair. She asked me what happened to my hair. I told her I'd had to take some medicine that made my hair fall out. She took that as a good enough answer and went back to her eggs.

Later, she glanced up at me and informed me, "You look like Zordon."

I had no idea who Zordon was so I just accepted her word for it.

It turns out that Zordon is the mentor of the Power Rangers. Good to know. We googled images of Zordon and...wow, the resemblance is uncanny.

I'm considering changing my profile picture to this:


I mean...I'm not sure anyone would even realize it isn't me in the above picture. Hahaha. I do so love the honesty of children. They're so refreshing.

Speaking of my hair, I tried to take a picture of the epic case of hat head I happened to have on Friday but it didn't photograph well. But trust me, it was awesome.

Wednesday, April 4, 2018

Tuesday, April 3, 2018

Some Days Are Better Than Others

Yesterday was a good one. I think part of what made it good was that I made myself get off my butt and actually do something. My mom took me to radiation (I think she misses spending every Tuesday with me.) and then we went to Walmart for a few things. I then spent most of the early afternoon with her at her house watching HGTV. That's always a positive.

I got home about an hour before Olivia did. I ended up falling asleep in the recliner. I vaguely heard her say to Tom when she got home, "Mom looks dead."

Huh.

Anyway, at 4:15 I woke up and realized it was time to do homework with Liv. I then remembered that I'd planned to make potato soup for dinner that night. I sighed with frustration at myself. Tom offered to peel potatoes. I knew he was busy. He'd been busy all afternoon and I didn't want to take him away from his work. I told him, "I can do it. I need to do it. I always feel better when I move around anyway."

And so I did. I told Olivia we'd work on her homework while the potatoes boiled and got busy.

I didn't sit back down for several hours and I felt pretty good for having kept busy and gotten some things done.

Olivia ended up eating three servings of potato soup, to it must have been good.

I'm hoping looking back I will be reminded that keeping busy and active definitely feels better than sitting around, no matter how tired I think I might be.

But gosh, sometimes that recliner looks so inviting.

Sunday, April 1, 2018

Sprigs

Okay, so I've been posting weekly pictures of my hair. I've been posting them here, on FB and on Instagram. Part of the reason I'm doing this is because I like having a record of how things are going. And yes, it's funny. I mean, I have like seven sprigs of hair on the top of my head but damn if they're not growing.

My mom swears that this is exactly how my hair grew in when I was a baby/toddler. She says I was bald until I was almost two and when my hair did finally make an appearance the last place it grew was on the top of my head. So...okay, it's coming.

But right now I feel like I look like a dude with male-pattern baldness. The hair on the sides and the back of my head is pretty thick. At least thick enough that you can't really see my scalp much anymore. But the top? It's shiny and well, kind of ugly.

Just saying.

I try to post each week without using Snapchat filters because I want to be real and honest. But I'm getting a little tired of real and honest. I know it's just hair. I know it's growing every day and new sprigs are probably popping up. But from week to week, even though the comments on FB are so kind and nice about how fast it's growing, I don't see much difference. I still see my scalp and I'm tired of it.

I don't know where I'm going with this. I guess I'm just keeping it real. Even though I can laugh about it, there are moments when I get discouraged and frustrated and just want this whole cancer chapter of my life to be over.

But you know by Wednesday, I'll be over this little moment in time and will post yet another "How's My Hair" pic. It's what I do.

And on the slightly brighter side, on Saturday, I had serious bedhead (even though I was awake from 2am to 7am watching Sharknado movies...I think my ear infection was keeping me awake) and kept complaining about how messy the left side of my hair was. I looked like a freaking baby chicken. My sweet Alyssa protested that I did NOT look like a chicken but I think she just looks at me through the eyes of love and couldn't see the mess that was on my head.

This too will pass and I will continue to laugh about more than I lament it. But I want to continue to be honest about it all, the laughter AND the lamenting. If I can't do that then what's the point?

Wednesday, March 28, 2018

How's My Hair Wednesday #4 - Three Weeks Post-Chemo

Here we are, four pictures in. Today I am three weeks past my last chemo. My hair is growing. Some say it's growing fast. Some days I wonder but then again, other days, I'm all, hey, check it out, the sides are starting to grow over my ears. Might need a trim soon. I have dreams of having hair these days. Like, LOTS of hair, enough to put it in a ponytail. Someday, right?

Tuesday, March 27, 2018

Nervous?

Okay then...it seems I'm not feeling all that adventurous.

Radiation starts tomorrow and I can't sleep. Why am I nervous about this? I sort of know what to expect. I have researched this. I know it's necessary.

But all the research in the world can't really prepare you for the reality.

The reality in my head right now is that tomorrow morning I will go and let the nurses and doctor strap me into a machine and it will burn me for about twenty minutes. I will return to have this done thirty-three times. And each time will be worse than the one before it because, like chemotherapy, radiation and the damage/curative effects are cumulative.

So...I'm nervous.

I hope in about seven weeks I can report that my fears were unfounded and it was a breeze. I really hope that's the case.

I guess we'll see.

Monday, March 26, 2018

Port Removal

Tom and I headed to the hospital last Friday for what will hopefully be my last surgical procedure ever. Please, please, please.

My oncologist felt that my prognosis is good enough that the risks of leaving the port in for any length of time outweighed the risk of needing to put one back in should the worse occur and my cancer returns.

My original appointment was scheduled for 12:30, I was supposed to be there at 11:15 for pre-op procedures to begin.

My phone rang at 9:00 that morning. It was a nurse at the hospital. They'd had some cancellations, could I be there asap for my procedure.

I told her it would probably take us about an hour since I needed to shower (using the lovely yellow Dial...ugh.) and we live about a half hour from the hospital.

She said that was fine.

So we got our butts in gear, and were at the hospital by 10.

We were home by 1:30. All went well and my port is OUT. There's been a little pain. I was a little nauseous as I was waking up from the anesthesia but all's well that ends well.

I think I might have over done it over the weekend. I'm pretty tired today. But I'm resting up now that the girls are back in school after a week off school.

Two days until radiation starts. Let the latest adventure begin.

Friday, March 23, 2018

Sleep - It's Me This Time

Sleep can be so difficult. There are moments when I'm sitting in the recliner, surrounded by my family, enjoying a television show and I can't keep my eyes open. Sleep descends upon me like a warm blanket that I can't resist.

Then, the very next night, I will be lying in bed, bundled under five blankets, unable to get warm, rolled into a ball of misery and I'm trying to wrestle with sleep, to grab it and force myself into slumber. Obviously, that doesn't work.

I like the quote from The Fault In Our Stars when Hazel compares falling in love with Augustus to falling asleep. "It happens slowly then all at once."

Olivia insists she doesn't know how to sleep. That child hasn't had a nap since she was two years old. Even during her bout with the flu a couple of weeks ago, she never napped.

The other night, she was awake until midnight. I kept telling her to go to sleep. She kept saying, "I don't know how." I would tell her to just close her eyes. She's reply, "But even with my eyes closed, I can still hear things."

I mean, sure, that's true, but sleep won't come if you don't close your eyes.

Or will it? Sleep happens even when people are trying to keep their eyes open so...there goes that rationale.

Anyway, this chemo thing/not working thing has screwed up my sleep schedule. I usually don't fall asleep until at least 1am. Then, on school days, I get up at 6:15 to get the girls up. I usually go back to bed at 7:30 once they are one the bus and sleep until at least 10:30. Yeah, I'm a mess. My whole days are spent recovering from not getting enough nighttime sleep and then I can't sleep at night all over again.

Boohoohooo.