Friday, November 17, 2017

Chiago!!

We’re off to Chicago today. I get to room with two of the nicest women. I met these women through Alyssa. They’re the moms of two of her best friends. But honestly, if I’d met them in any other way, I can totally see us being friends even without having daughters who appear to adore each other.

I also get to spend some awesome time with my girl. I feel so incredibly lucky that she still wants me around. She said that she and her group of friends, the ones she’s rooming with, were discussing who they wanted to be their chaperone and they all declared they wanted me.

Awww.

She told me recently that her friends Amelia and Sabrina were arguing over which one of them was more like me. Ha! I laughed and said, they want to be like a middle-aged mom? She said they enjoy my snark and my humor and both think they’re more like me than the other.

Alyssa declared, “But since you’re my actual mom, I think I’m the one who is more like you.”

How freaking adorable is that? I mean seriously?

Her other friend, Tessa, follows me on Instagram and Alyssa said that the few times I’ve posted a picture of me after chemo, Tessa will get a little teary-eyed and say, “It just makes me so sad because she doesn’t deserve this.”

I’m getting a little weepy here myself.

Alyssa has some amazing friends and I’m so incredibly grateful. High school can be a tough time in one’s life and I’m so glad she has an great team of friends who are so supportive of each other. Though, obviously, they’re also just a little competitive, but that’s not necessarily a bad thing, unless they’re competing to be more like me because, yeah, maybe not do that, kiddos?

Not because I’m not an awesome 47 year old wife and mom and human being but because, yeah, they’re all 14/15 year old girls who need to maybe not aspire to be me right at this point in their lives. They’re funny, though and I’m definitely flattered that they think I’m awesome enough to want to be like me.

And lest anyone worry about Olivia while Alyssa and I are galavanting our way through Chicago for the next couple of days, Liv is getting to spend some quality one on one time with her very favorite Gram. I’ve got her mostly packed for her night and day with Gram and she’s already planning the things she’s going to take with her. She’s also asked me at least ten times if her dad is taking her to Gram’s house or if Gram is coming to our house to get her. I promised I’d call Gram and ask her that very question at some point. I better get on that.

This means Tom gets about 40 hours of peace and quiet with maybe about fifteen minutes of Liv time just to keep him on his toes. I’m pretty sure he’s very much looking forward to having an empty house all to himself. Not that I blame him.

Thursday, November 16, 2017

An Eleventh Birthday

Olivia will be eleven on the Monday after Thanksgiving.

This Sunday, her best bud, her favorite cousin, that imp Jaxon, will be ten. His dad got a coupon from Jungle George’s in Fort Wayne offering a free birthday party.

We considered doing a joint birthday for Jax and Liv on Sunday, the day my brother was able to schedule the free party.

At first Olivia was cool with that. But the more she thought about it, the more she wanted to have her ‘party’ on her actual birthday.

Last night, she and I talked about what she considered a party. She wants Barbie decorations and plates. She wants a pink cake with pink frosting and maybe a giant pink B on the cake denoting that it is a Barbie cake.

Okay.

She went on to tell me that she wants to look like Barbie too. She wants her makeup to make her look like Barbie and she wants to wear Barbie pink clothes.

Okay, but…

She wants her Barbie styling head to be the centerpiece of the table on the night of her birthday.

Okay, fine to all that but does she understand that this ‘party’ will be her, me, her dad, her sister, and her Gram and Pawp?

She nodded.

Whew.

I continued the conversation with, “You know, maybe next year when you turn twelve, if you’re talking to your classmates, maybe we can have a party where we invite some of them.”

She sort of rolled her eyes at me, as if to say, “Whatever Mom. We all know I have no intention of speaking to my classmates, like, EVER.”

Except I kind of think she WANTS to speak to her classmates. She wants to interact. She wants to be part of the fun, the groups, she antics that right now, she just observes. She just hasn’t figure out how to break the ice. I mean, we’re six years in at her school and she’s talked to maybe two classmates. So she’s got this precedence that she’s set and maybe she feels like talking to them has become this HUGE thing that she doesn’t even want to overcome.

Who knows? She still received speech therapy at school, which emphasizes communicating with her peers. That’s her biggest challenge these days.

So maybe having a goal, a friend birthday party when she turned twelve, will help her work toward talking to her peers.

It can’t hurt.

Wednesday, November 15, 2017

Wonder

Last weekend my mom bought the book on which the movie Wonder is based. Kelly Rippa told her viewing audience that they should read the book before seeing the movie and my mom takes her morning talk show hosts’ advice (on occasion, let’s not be crazy.)

She read it in about a day and a half. Then she gave it to me. She told me she didn’t cry reading it nearly as much as Kelly reportedly did but that there were some moments where she did.

She warned me that the parts during which she cried were more about the older sister than about the main character, Auggie.

You see, I’ve shared my worries with my mom concerning Alyssa and the struggles that go along with being the typical sibling of a special needs kid.

If you’ve read even one Jodi Picault novel, you know that typical kids are at high risk for ‘issues’ when they have siblings with special needs. And we know why. It’s because the mother always, ALWAYS puts the needs of the ‘special’ kid first.

One of my biggest fears has always been that Alyssa would feel ‘less than’ because she’s typical; that she’d feel pushed aside because her sister has more needs than she does. I’ve voiced those fears to my mom on more than one occasion.

Which is why she gently warned me that in the book Wonder, the older sister has feelings of being the second place child because she’s typical, she doesn’t have special needs.

So I was warned.

I’m only about a third of the way into the book but already I can tell that this author has been kinder to the mom than Jodi Picault ever is. She doesn’t ignore her daughter, her ‘typical’ child. Sure, Auggie’s needs are often more pressing but the mom has (so far) noticed her daughter’s need for attention, her need to matter.

I hope I’m better than most of the mom’s Jodi Picault has written about. I hope I put Alyssa’s needs right up there with Olivia’s. I hope Alyssa always, ALWAYS knows how important she is, how amazing she is, how much I love her.

I hope she also knows how much I like her, that I think she’s just such a neat person and that she’s one of my very favorite people in the whole world and I will always choose to spend time with her over doing anything else. I pray she knows this. I pray I manage to show it in our day to day interactions, our hugs at the end of an evening together, our time on the couch when she’s showing me videos and memes.

I love both of my girls and acknowledge that their needs are different but neither one has more needs, nor are the needs of one more important than the needs of the other. It’s my job to figure out how to make sure they know this, even as I’m putting one off to meet the needs of the other. I hope I balance that well. I pray for the wisdom and strength to do that every single day.

Tuesday, November 14, 2017

Weekend

This past weekend was pretty good. Since was almost two weeks out from my last chemo, I felt good enough to bake cookies, sweep the kitchen floor, put away several loads of laundry (that Tom washed and dried, he’s still totally my hero.)

I also managed to pick up the toy room a little. That room…OMG. It’s a nightmare. I need to go in there and spend about twelve hours purging the tiny little clutter-boxes that fill that room. There are things in there that need to be tossed, donated, or burned. We keep the door closed most of the time just because it’s depressing to even look in there.

But other than the depression that is the toy room, I felt like I got some things done that hadn’t been done since my surgery.

I mean, I’m trying here. And I feel the need to record what I was able to do twelve days post-chemo this time around.

Which wasn’t much, really but it was something. It was more than I’ve done in the time since my surgery, more than two months ago.

So:

Cookies – they were baked.
Laundry was folded and put away.
There were a few pieces of furniture that were dusted (but so many more still needs it.)
Sheets were washed and put back on beds.
Dishes were washed (several times, go me!) and put away.
Kitchen and bathroom floors – swept (but not mopped, maybe next weekend?)
Tiny crappy toys – cleaned up off the floor of the toy room. Thrown away? Not yet but…someday, hopefully soon.
Pictures Olivia colored have been taped to the mirrors in her room. She’s very proud of these pictures and she should be. Her coloring has come a long way and I want to encourage her to continue to grow and be proud of her work.

Oh yeah, I parented too. Go me.

Monday, November 13, 2017

Another Post about My Hair

Okay, one of these days I will stop talking about my hair. Maybe. No promises.

Did I mention that we used Tom’s clippers last week and buzzed it off? Yes? Okay, sorry for repeating myself but it’s worth it to declare how much freer I feel now that it’s gone.

I hate being a slave to my hair. That’s what I felt like last week. My hair was all I could think about. Had more fallen out? Was it poking out of my hat? Was it all over my shoulders? Was it going to fall into my food?

Thoughts of my stupid hair consumed me.

So I took control. We cut it off at the root, if you will.

There is still quite a bit on my head, acting as a sort of Velcro for my hats.

But it’s no longer the thing I think about constantly.

So I guess what I’m saying is, if you’re facing chemo and thinning hair, when the hair has taken over all your thoughts, go for it. Shave that stuff off. You will feel twenty pounds lighter, metaphorically.

I feel free and light and like I can get on with my life without policing a near-constant steam of hair falling from my head. For what it’s worth.

Saturday, November 11, 2017

The Chemo Diaries


Chemo Diaries
For posterity I thought I’d write up a bit of what life was like after the second round of chemo. Just to remind myself, I looked back at how the first round went.

Round 1:
Day of chemo: High from the anti-nausea meds. No real effects of the chemo felt. I walked six laps around our yard (one square acre) grooving to the music on my old phone.
Day one after: Felt rundown, as if I were coming down with a cold or the flu. General tiredness. Left work after six hours.

Day two after: Still rundown, a little achy. Noticed my incision had started to seep a little. Ick. Worked nine hours this day.

Day three after: Woke up at 4am feeling blood/fluid running down my side from my incision. Totally stressed over this. Walked into my surgeon’s office as they opened that morning. They said was fine, normal, told me to keep it covered with gauze. At this point, I should have taken stock out in the gauze industry.

By Saturday, which would have been day four after chemo, I was feeling pretty good. I managed to go to the grocery store, take the girls to lunch and only had to rest a bit when we got home.

Round 2 was harder. So much harder.
Day of chemo: Not high at all from the anti-nausea meds. Bummer. Instead, the feelings of tiredness and general yuck started right after the infusion ended. Boooo!
Day one after: Woke up five times to pee in the night. Each time I laid back down I had to curl into a ball to try and settle my stomach. Managed to get through eight hours at work. Go me.

Day two after: Still tired, still achy, still sort of sick to my stomach. The anti-nausea pills my nurse prescribed help but not much. Weird taste (not exactly metallic) and what feels like a film in my mouth. Just all around feeling sort of gross. My hair started falling out today.

Day three after: Okay, so my stupid incision is bleeding…again. Not the normal day to day seepage but actual blood this time. Yeah, it must be the Friday after chemo. Damn it. Spent some time in the surgeon’s office again. This time, I’ve been advised to start packing gauze into my now-open wound. Yay. One more gross thing my poor husband has to do for me. Hair still thinning but not too bad yet.

Day four after: Still tired. Still queasy. Make it through lunch with my mom and Liv (Lyss is in Defiance for an honors choir.) Wore a hat to town even though hair isn’t too thin yet.

Day five after: Go to Defiance to watch Alyssa sing. She’s so beautiful. I love that she gets to do these things. I’m also so grateful that she has friends whose parents are so awesome to pick her up and take her to the practices for this sort of thing without me having to ask. I eat Lemon Heads and mints to counteract the feeling of yuck in my mouth. Indigestion is a near constant battle. Somehow, I managed to avoid heartburn through two pregnancies and now…it feels like chemo has decided to make up for that. Hair thinner still…wearing a hat constantly now.

Day six after: Took Olivia to a dentist appointment. While walking around the mall afterward with her, I was so tired. Needed to get some strawberry lemonade to buck up and get from one end of the mall to the other. Hair…still there but starting to get annoying.

Day seven after: Happy birthday to me. My hair is driving me freaking crazy. It’s poking and stabbing and just…ugh. Oh yes, and joy of joys, today was my first day of experiencing the dreaded diarrhea. Wheee!!! No birthday pie for me. So sad.

Day eight after: Okay, seriously with the hair. I can’t stand it. It’s everywhere, it’s stabby, it’s annoying. I’m approaching Gollum status. Not only is the heartburn still here and the occasional feeling of just yuck, this hair thing is making even the best moments feel icky. My mom offers to use Tom’s clippers and just cut it all off. We go for it and oh my goodness, the freedom I felt the moment she was done. There is still a very short bit of hair left, sort of like Velcro for my hats but it feels so much better I can’t even describe it. I still slept with a hat on because the ‘velcro’ hair still on my head kept catching on my pillow. But even that was not a bother considering I know longer have strands long enough to poke out my hats. I don’t have to clean out my hats when I get home. I can shower without feeling like I’m attempting to wash a shedding dog with piles of hair on my hands and in the bottom of the shower. Whew, just…relief.

Day nine after: Still moments of general tiredness or feeling less than great but mostly good.

And now we wait another week and a few days for the next chemo. Until then…

Friday, November 10, 2017

And Now For Something Different

Woah, I didn’t mean for this to become the all cancer, all chemo, all about me, all the time blog. Sorry. But wait, maybe not so sorry. I mean, this is MY blog and so, yes, I’m going to write what’s on my mind and these days, it really is pretty much all cancer, all chemo, all me, all the time.

Except when it isn’t.

I had parent/teacher conferences with Liv’s teachers yesterday.

They were basically what I expected.

She loves to read, she excels at spelling. She hates math. She needs a lot of supervision and yet…just the other day, she sat at her desk, her teacher sat six feet away at her own desk and Olivia worked on a project for twenty minutes without stopping to doodle. Olivia couldn’t not see if her teacher was anywhere nearby because her desk (O’s desk, that is) faces away from the teacher’s desk. They did that because Olivia and another classmate have bonded and if they can see each other, they giggle and act silly all day long. Now they’re back to back. Smart teachers!

(Tangent: The classmate that Liv has bonded with is in first grade. This makes sense to me because emotionally, I think that Liv is about 6 or 7 years old. So the first grader is her emotional peer. I take heart in this. It means she CAN connect with peers, they might just always be younger chronologically than she is. And that’s okay.)

She’s come a long way in the six or so weeks that she’s been in the smaller classroom. She’s working more independently (most of the time, we still get reports that she had a tough day and didn’t stay on task but they’re fewer and farther between.) Her handwriting has improved immensely. There is less doodling on her homework and classwork pages.

She’s still in the typical classroom for science and social studies. Her teachers wanted to pull her out for social studies but realized that if they did, she’d be getting pulled out often enough that it might raise some red flags with the state. So…no. We’re going to keep things as they are.

I mentioned that I’m actually okay with that because I truly believe that Olivia gets something, even if it’s very subtle, out of being around her typical, age-appropriate peers. It might not come through for years yet, but being with these kids, even for a couple of hours, during a couple of subjects, will help her in the long run. Sure, she might need extra help with the academics, but school is about more than the grades we get. Her teachers were both glad to hear that I felt that way because they agree.

I ended up spending twenty minutes with O’s newer teacher, the one who works with her most closely. Then I headed down to meet with the typical classroom teacher. She’s awesome and wanted me to understand that she wasn’t giving up on Olivia even though she’s only with her for two subjects.

I told her I understood that and never thought she didn’t want Liv in her classroom. I pointed out that Olivia is an enigma that we’re all still trying to figure out.

We talked about Liv for maybe ten minutes then she started asking me about my treatment.

It turns out she’d faced a cancer diagnosis not even a year ago and we compared notes about chemo and radiation and recovery. She didn’t have breast cancer, so her chemo was completely different. She never felt sick and didn’t lose her hair. But she was stage 3, which is SO SCARY and is currently doing very well.

And look at that, we came back full circle and are talking about me and cancer again. How about that?

Thursday, November 9, 2017

The Ever-Annoying State of My Hair

I am so ready for this to be done. My hair is awful.

I mean, I knew it was going to fall out. I was fine with that. I’ve made peace with it and it’s all good.

So can it just go now?

I mean, seriously, there is SO MUCH hair. And it’s everywhere. And it’s stabby and itchy and annoying.

I realize that in the grand scheme of things this is not that big a deal. I feel crappy at some point every single day. And yet, right this second, my hair and what feels like its s l o w descent to my bathroom floor feels like the biggest thing. Maybe because I know there’s something that can be done to fix it.

I need to go home, get my husband’s clippers, and buzz the crap out of the remaining ten strands of hair. That would get rid of the last stubborn few that are just waiting to stab me in the skull, attach themselves to my hats and just irritate the shit out of me.

I can’t control when I feel terrible. I can’t control the fact that I pee all the dang time. I can’t control the leg cramps that wake me up on a nightly (sometimes twice!) basis.

But I can take control of this hair situation.

And I’m going to. Because it needs to be over. It needs to be gone.

Then I’ll google how long it takes after finishing chemo for hair to start growing back.

Wheee!

Wednesday, November 8, 2017

Life Goes On

I’m putting off my next chemo.

It’s okay, though. I talked to the nurses at the Cancer Center, who then talked to the doctor and he approved my decision to delay the next round for a week.

It will probably seem trivial but I felt like it was important to wait a week before having the next one.

See, Alyssa’s choir trip to Chicago is the weekend of November 17. I was accepted at a chaperone before I was even diagnosed, before surgery, before chemo. Before…

We paid for both Alyssa’s and my costs for the trip. We’ve had this planned for months. I’m going to room with Nora’s and Tasha’s moms. It’s going to be awesome.

Except, it almost wasn’t because I was originally scheduled to have chemo on November 14, just three days before we boarded the bus and headed to Chicago for two days and a night of shows and walking and eating and socializing.

And I knew that if I had the chemotherapy on the 14th, I was going to be miserable to the point of possibly not even going. I mean, what’s the point if I couldn’t walk more than a block without needing to rest or not being able to eat due to nausea and just a general feeling of yuck?

So I talked to the nurses, explaining the situation. They were sympathetic and the doctor made the final call, which was that it wouldn’t hurt me or my chemo schedule to put it off for a week. So yay.

Tom questioned whether this was a good idea.

I pointed out that the whole reason we’re doing this is because I want to live. I want to be here for my girls. I want to be here this week, and next month and in 2021 and when they find partners and if they decide to have babies. I want to live.

And I need to continue living right now as much as I can. Going on this trip makes the chemo that I’ll have the week of Thanksgiving worth it. It makes everything more clear, it makes me remember why I’m suffering through the effects of chemo.

Because I want to live.

Friday, November 3, 2017

Chronically Gross

Here’s the thing about chemotherapy…it attacks the fastest growing cells first; which is why it works so well at killing cancer cells. Those suckers grow like crazy. But hair and skin are also fast growing cells, which again, is why hair falls out and skin breaks down.

Scar tissue is, duh, skin. So yeah.

I had chemo on Tuesday. By Thursday, my incision was oozing. It’s gross. I saw my surgeon yesterday. He packed the incision with gauze (again…GROSS!) and put me on two antibiotics and some probiotics for the next ten days.

He also wants Tom to pack my incision each day with new gauze. Poor Tom.

Thankfully, he’s not all that squeamish. He’s more worried about hurting me than about the grossness of the process of packing the incision. But still, so gross. (And for the record, he didn’t hurt me, he was very gentle.)

I know this is just par for the course. We just have to keep on keeping on and next week will be better. My energy will come back, my incision will stop seeping. I will sleep better and my stomach won’t hurt all the time.

I know all this logically but while I sit here with the corner of a gauze pad stuffed inside an opening in my body (seriously, SO FREAKING GROSS) and know that for the next ten or so days, my dear, loving, kind, generous, over-worked husband will have to replace that gauze daily, well, I’m just feeling a little sorry for myself.

It must be the Friday after chemo.

Thursday, November 2, 2017

The Kindness of Friends

As noted in yesterday’s chemo diary, I received a hat in the mail from Julie just this past Saturday. It was much appreciated.

I have been so blessed to have some amazing friends, far and near, as my family and I go through this whole cancer diagnosis, surgery, chemo thing.

Julie has sent me some awesome gifts, usually arriving just when I need them, even though I didn’t know I needed them until they arrived in my mailbox or on my doorstep. Her kindness, thoughtfulness, generosity humbles me.

The parents of some of Alyssa’s friends have shown so much kindness during this time. Their willingness to step up and do things that I simply can’t do right now shows so much grace and makes me want to be a better person.

The Porch family has brought Alyssa home from more football games in the past couple of months than I can count. Sure, we’re only a mile out of their way but still…I have never once had to ask them to do this, Mrs. Porch has just called or texted the day of the game and informed me, “We’ll be bringing Alyssa home tonight, stay in, stay warm.”

So kind. So sweet. It brings tears to my eyes.

This coming weekend Alyssa has an honors choir thing in Defiance, Ohio (about an hour drive from our town.) On Monday, Alyssa’s friend Serena’s mom texted me and said she’d gotten together with another friend’s mom. They’d decided that Serena’s mom would take the girls to the Saturday morning practice and Tessa’s mom would bring them all home. That same afternoon, Tessa’s mom texted to suggest that Lyss go home with Tessa after school and she’d (the mom) take the girls to Defiance for the Thursday practice.

All I have to do is rest and stay healthy enough to attend the performance in Defiance on Sunday afternoon.

I am blown away by how much everyone is doing for us. These little things mean the world when you’re feeling gross and tired and, at times, completely overwhelmed by all that needs to be done and the energy to do none of it.

Now…if someone would just come and clean my bathrooms...

Wednesday, November 1, 2017

Chemo #2

I was not high yesterday after chemo. Nope, instead I just felt yucky. Yes, yucky. Apparently chemotherapy turns me into a four year old.

I had to get up five times, FIVE TIMES, to pee last night and each time I got back into bed, I had to curl into a ball to try and sooth my stupid stomach, which was queasy but not quite puky.

I went to bed at 9:30 and woke up at 11:35 sweating like it was 85 degrees in my house. For the record, it was 67 degrees. To be fair, I did have a sheet, a comforter and two quilts covering me, so that’s probably a big part of the disgusting sweat. I tossed off all but a sheet and a quilt, turned on a small fan by my bed and rest for about an hour before having to pee again.

Today, the day after the second chemo, is better than yesterday. I don’t feel as sick or as tired. We’ll see how the day goes.

Big news…my hair is falling out. I can stand over a trashcan and run my hands through my hair and see the strands dropping. We’ll see how long it takes to all fall out. Here today, gone tomorrow? I have a hat in my bag (the one Julie sent me all the way from Indianapolis!) in my bag should the hair just suddenly decide to vacate my head and I have to leave work bald. At least my head won’t be cold.

Tuesday, October 31, 2017

The Halloween Part of the Party

Yes, I got my hair cut while in Battle Creek. But that wasn’t the main reason we even went to Battle Creek.

About a week ago, my grandma, my mom’s mom, turned 92. My aunt, the one with whom my grandma lives, decided to celebrate Grandma’s birthday with a pizza party with a Halloween theme. We all dressed up and ended up having Trunk or Treating in the parking lot of my aunt’s salon (she has a big room attached to her salon where she throws parties.)

Everyone dressed up, most of us in costumes made or bought by my mom. I wore scrubs and had a stethoscope, so yes, I was a doctor. I was most excellent at diagnosing and curing pepperoni-itis. To avoid pepperoni-itis, one should avoid hanging out with dirty sausages and if avoiding the dirty sausages is impossible, always wash your hands after you’ve spent time with those dirty sausages.

Alyssa was Wonder Woman (again…remember when she as Wonder Woman back when she was 7? She was so flipping cute.)


Olivia was Princess Tori from Barbie, the Princess and the Pop Star. But she was Princess Tori after she (Tori) had switched places with Kira, the Popstar, for the day. So Liv’s dress was purple, like Kira’s, her hair was purple and she had a microphone. The only indication that she was actually Tori was the heart necklace she wore. See, Kira wears a star necklace and the two never switch necklaces, even when they switch everything else. Yeah, it was convoluted, but she could explain it to anyone who asked.

My mom was an elf.

My nephew Jaxon was a Tasmanian devil. Not to be confused with Warner Brothers Taz. No, he was a wild Tasmanian devil and damn, that boy had mastered the weird growly, hissy sound Tasmanian devils make. It was SUPER creepy.

Grandma Dorothy was The Queen. She was adorable.


My cousin’s daughter S was Slice, the Papa John mascot.


There were so many others but the above (no counting Grandma Dorothy) were the ones my mom had an actual hand in either making or acquiring (she didn’t make my scrubs, she bought them for $3 at our local Project Help.)

There was much fun had as we ate pizza, traded candy, visited with relatives we don’t see often enough and just mingled, trying to avoid the wild animal that wouldn’t stop chasing Princess Tori from one corner of the room to the other.

Monday, October 30, 2017

The Evolution of My Hair

Remember when I got that horrible haircut back in, what was it? 2013? Wait, let me check. Okay, so it was the Monday before Christmas 2014. Thank goodness for archives.

Yes, I got that horrible haircut at the Walmart Salon. I know, you get what you pay for. Then I let it grow out from that point on, with a quick trim here and there from the one and only Alyssa J. Ordinary.

Well, as we all know, chemotherapy often (usually?) makes one’s hair fall out.

My oncologist has pretty much guaranteed that my hair will fall out.

So this past weekend, we took a journey to Battle Creek, Michigan where my lovely Auntie Lorry cut my hair so that the cleanup (Tom has an issue with hair in the drains of our tubs and showers…  ) will be easier .

Alyssa took picture before, during and after the epic evolution of my hair.

Before:


During:



Let me state here that I thought I’d hate my hair being this short. I mean, I have this HUGE round moon face and I worried so that short hair would just emphasize that. Though, honestly, it’s not like my hair did all that much camouflaging of my giant moon face when it was in a ponytail, which was like, ALWAYS the case.

But here it is after:


And guess what? I don’t hate it.

It helps that Lorry did an excellent job with the cut. She took so much care and time to get it just the way she (and I) wanted it. She’s the BEST.

Friday, October 27, 2017

Stream of Blah, Blah, Blah

This week has been a pretty good one. I kind of thought it would. I mean, we’re over a week out from the first chemo, so things had to be uphill, right?

I’ve felt pretty good, if a little low on energy, this week. My incision is still seeping a little but nothing to be too worried about (I hope. I guess I’ll find out on Monday when I see the surgeon again.) And I am REALLY tired of wearing a bra to bed. Six weeks feels like a LONG time to be wearing a damned bra. But we do what we must, right?

My car is finally fixed! We’ll celebrate that one even as we weep on the way to the bank to withdraw $900 to pay the mechanic.

The girls and I are going with my mom this weekend to celebrate my Grandma Dorothy’s 92nd birthday. My Aunt Lorry is hosting a pizza/Halloween/Birthday party for everyone and we’re going to go and have a blast. We’re going to go up early so Lorry can cut my hair. Won’t that be fun? We’re going with a very short, but not quite buzzed cut. Someone at work asked me if I was doing this in an effort to maintain control over my hair.

Eh, I don’t think so. I think the obvious reason is that if it’s going to fall out (the doctor says it IS going to fall out) I’d rather deal with a bazillion inch long strands of hair than a bazillion eight to ten inch strands of hair.

I don’t have much control right now over anything. I mean, I can’t stop my incision from leaking. I can’t control what the blood work says come Monday morning when they do the labs and decide if I can have chemo on Tuesday. I can’t control how I feel after chemo for following week. I’m trying to embrace this whole thing as one big uncontrollable rollercoaster ride.

Yeah, it’s going REALLY well.

I want to go to the last home football game tonight because it will be Alyssa’s last performance in the marching band as a freshman. I know, that’s not really that big a deal but it feels like it is to me. She’s excited about it and wants me to be there. The problem is…it’s going to be forty freaking degrees out there and it’s raining. Do I go and risk getting sick? I mean, I know being cold and wet don’t actually make a person sick. I GET that. Duh. But, I’ve had one dose of chemo. I’m already working on a lowered immune system and I’ll be around a lot of people, people who might be sick. They COULD have been exposed to germs that are incubating and just waiting for someone to come along and be a nice warm host.

So there’s that conundrum.

My chemo nurse recommended that I keep a chemo journal. I do know that this is excellent advice and yet I’ve managed to write in a paper journal all of one time since my first chemo, and that was the day of chemo, before I got too high from the anti-nausea meds that were being pumped directly into my veins.

I could have written about how on Wednesday, the day after chemo, I felt run down but not too bad. I made it through an entire day at work. Thursday was pretty much the same, kind of like I was on the verge of coming down with something but it never really materialized. Friday was tough, what with the seeping incision and all around feeling terrible. I slept all day Friday, which was the third day after chemo.

Saturday, day four after chemo was okay. I showered, took the girls to town to buy groceries and have lunch. I think I might have even made dinner that night. Go me!!

There’s nothing much to report after that. It was as if the first four or so days were tiring but not horrible. The whole idea of the journal thing is to see if there is a pattern, so perhaps I’ll be better about it during this next cycle to see if it goes the same as the first.

Spirits are good. I mean, what can I do? The only way to the end is to go through it all. Away we go.

Tuesday, October 24, 2017

Haunted...?

When I left work last Friday to go home and sleep the entire day away, I made a quick stop at Walmart because the only things that sounded good to eat were Fruity Pebbles and hamburger dill pickles. Not at the same time! Eww.

Anyway, I also picked up some milk and bread and a magazine in case Olivia needed to poop over the weekend.

As I was loading my things into my car, I noticed a woman in the car facing mine. She kept looking at me and at my car. I finished putting the bags in the car, put the cart away and had climbed into my car when the woman watching me got out of her car and approached my door.

I opened the door a few inches.

She said, “I know this is really weird but I had to tell you that there is a woman in your car with you.”

I looked at her and then at my passenger seat, which held my purse, the bag I carry to work each day and my sweater.

The woman outside my car insisted, “I know there’s not really anyone there, but from my car, I can see an old woman with glasses and gray hair sitting in your passenger seat.”

“Oh,” I said, smiling a little to let her know I didn’t think she was completely crazy.

Once she’d told me about my ghostly companion, the woman went back to her car. As she climbed into her car, she glanced back at my car, through the windshield at the passenger seat and at that she covered her eyes, as if freaked out by what she’d seen.

I once again looked at the seat next to me and saw nothing. And honestly, I felt nothing, no ghostly presence, no sense that someone or something was in the car with me. I didn’t get out of the car to look at it from the angle the woman had looked because, well, I wondered if she was scamming me and just trying to get me to get out of my car. Instead, I started the car and headed home.

Once I’d driven about four miles, while waiting at a stoplight to turn left and head toward home, my stupid car’s stabilitrak came on again, ding, ding, dinging me that the engine power was reduced.

I pulled over and let it sit for twenty seconds. It didn’t help. I drove it about four miles at about forty miles per hour and pulled into a cemetery where I turned the car off and waited at least two minutes before turning it back on.

This helped the car to reset itself and I was able to drive home without another incident.

I wonder, though…maybe my ‘passenger’ made my car act up because she needed to me pull off at that cemetery so she could get out…

Monday, October 23, 2017

Grace

Last Friday was…tough. I woke up at 4am to the feeling of something running down my side. Yes, of course it was my left side. Yes, my incision was leaking a clearish, yellowish, blood-tinged fluid. It was gross. And drippy. And disgusting. And I was scared and annoyed and wide freaking awake. I’m kind of ashamed to admit that I woke my husband up at 4:05 to complain about the grossness that is my body. He was tired and probably frustrated with me but tried to be helpful.

I feel like my body isn’t currently my own. The scars are not that big a deal. I mean, whatever. But the leaking, the aching, the tugging. I feel like I can sense my hair dying, though none has fallen out yet.

I ended up wrapping a towel around my chest and sleeping in the recliner until Olivia woke up. I managed to get through getting her ready for school and then dressed myself, using a gauze pad and a wash cloth to continue to soak up whatever might be leaking out of my body. Ick.

I found myself at the doctor’s office at 8am, which, yay, is when they open. The nurse practitioner and doctor were both incredibly kind as they examined me. They declared that the leaking is actually a good thing. The fluid was clear, not cloudy, so no sign of infection. The fact that it’s coming out is a good thing because it means it’s not building up in my body. Still…can it just…not?

I did manage to make my way to work but felt pretty horrible most of the morning. I hadn’t showered due to the uh, leaking. I wasn’t sure I was supposed to. The doctor told me it was fine to shower. No immersion into water but showering is great. And I’d like to report, my shower on Saturday morning was awesome. So yeah, I felt gross, physically, emotionally, medically.

I’m so tired of feeling like I have to call my doctor every third day. And yet, I know this is something that will likely continue for many months to come. I know we have to do more damaged to my body before I can finally start to heal.

I’m afraid I’m not dealing with chronic illness with the grace I’d hoped I would. I’m not above feeling sorry for myself and that’s what I did on Friday. I was tired, I was scared, I was sick. I ended up going home at 11:00 that day, making a quick stop at Walmart for Fruity Pebbles and hamburger dill pickles. What?

I slept for the entire afternoon and most of the evening on Friday. I neglected my kids, my husband, my house and my job.

And on Saturday, I felt physically better. The leaking has mostly stopped. The nausea is mostly gone. I showered which meant I smelled better. I took the girls to the library, to lunch and to buy groceries. We did normal things and spent actual time together.

I know this isn’t forever but on Friday, it felt like it was. It felt like I was going to be sick forever and that I had been sick forever. I felt like a failure as a wife and a mother.

My dad wants me to extend an olive branch to my sister and there I sat thinking, “Why? I didn’t actually do anything wrong!?!” So that made me feel like I was failing as a daughter and a sister.

I haven’t been much of a friend lately either, so let’s add that to the list.

This journey is going to be up and down. I know this. I just pray to face the down moments a little more gracefully than I did last Friday. Or, you know, maybe just sleep through them again. That works too.

Thursday, October 19, 2017

System Check

Each morning I wake up and do a system check.

This morning went like this:

Head? Achy.

Stomach? Queasy.

Incision? Better.

Lower back? So much better now that the hematoma is gone and I can sleep on either side.

Hair? Still there, for now. I guess we’ll see how that continues. The doctor and nurse both say it will probably start falling out about two weeks after the first chemo so…yeah.

Hand bruise from IV? Still gross.


Port? Incision still healing, port seems intact.

Clock? 4am…why am I awake!?!

Wednesday, October 18, 2017

Chemo

I had my first chemo appointment yesterday. It took about three hours from start to finish, with start being arriving and meeting with the doctor and finish being walking out the door.

The oncologist didn’t think starting chemo yesterday would impede the healing of the incision they’d reopened to remove the hematoma. He was actually glad they’d gone in and taken it out. He said to the student who joined him during our appointment yesterday, “She had the biggest hematoma I’ve ever seen in all my years as a doctor.”

Go me, excelling at something disgusting.

Upon release from the doctor’s office, I was sent into the big room where everyone received chemo like one big happy family. For the record, my being there totally skews the average age by about ten years. Just saying…

I was told to pick a chair and make myself comfortable. Okay. There were already four people receiving treatment and one of those people had two caregivers with her.

My mom and I found a chair in the corner and settled in. I was probably in that chair for twenty minutes before the nurse had time to start my treatment. This poor woman is the only nurse working and so she was dealing with every single beep from every IV machine and changing bags and removing needles from ports. She works VERY hard and has a great sense of humor about it all. Best person for the job, if you ask me.

When it was my turn to have my port accessed she said I would feel a stab. Nope, I felt nothing. I told her it was painless. She asked me if I was dead.

About an hour in, my mom said, “As we go along in these treatments, you might get dropped off.”

Yeah, I can totally understand that. I finally told her that if she wanted to go get something to eat, I was fine with her leaving. I just requested a Coke from McD’s if she did leave. I mean, everyone knows that McD’s Coke is the best Coke around. She was kind enough to fill my request.

I ate some cheese popcorn while I waited.

The anti-nausea meds they gave me started making my head fuzzy. By the time we left the clinic, I said to my mom, “I think I’m high. Am I talking really loud and fast?”

She said, “Not really, but maybe a little.”

We went to Walmart where I bought shampoo and a jacket for Olivia. We met one of my mom’s many sisters at Subway and I ate half a sub. It was delicious. I also bought Tom his own sub because I’m that kind of loving wife.

I was still high.

We beat the girls home by about three minutes.

I was high all night long. Alyssa thought I was hilarious.

I posted this picture on Facebook because, as I told Alyssa, “I’m so cute!! Look at how pretty my eyes are!”


Yep, totally high.

Today…I feel okay. A little rundown, kind of tired. Not quite nauseous but also not exactly good either. I’ve been told that today is the worst and it’s uphill from here. I hope so. If this is the worst, I will count myself very lucky.

Monday, October 16, 2017

The Grossest Thing Yet

I have mentioned the lovely hematoma that developed after surgery. It stuck around, being a pain in my left breast. (I’m so clever.)

Last Monday, I noticed what looked like a blood blister on one end of my incision. It looked like a blood blister because it was a blood blister. It was yucky. I checked it daily and by Wednesday evening, I decided I’d call the doctor the next day.

I called on Thursday at 8am, and talked to the receptionist and she put me on the schedule that day for 9:30. I went about my morning at work.

At 8:45, I went to the bathroom and as I was heading back to my office, I thought, “That’s weird. I’m not hot but it feels like I’m sweating.”

I reached under my shirt (because I’m all dainty like that) and swiped at what I thought was sweat. My hand came out bloody.

I went back to the bathroom, moved my sweater aside and saw that I had a huge blood stain on my shirt. Because I was alone in the bathroom, I pulled up my shirt to see if I could see where the blood was coming from. The blood blister had not burst. I couldn’t see the source of the blood.

I decided I was not waiting until the 9:30 appointment time. I told a couple of people I was leaving and headed to the doctor, with a minor detour to Walmart to buy a shirt and bra that were not bloody. Ick.

I got to the doctor’s office about twenty-five minutes early. I showed the receptionist the blood stain on my shirt and was ushered back to an exam room immediately. Ha.

I was then informed that the surgeon was on vacation and the nurse practitioner would be in to see me in a few minutes. I was told to take off my shirt and bra and put on a gown.

It was during the disrobing that I saw the source of the blood.

My nipple. It was so gross!

The nurse practitioner showed up and did a quick exam. She noted that the blood that was seeping from my body was not old blood but new blood and so that was a cause for concern.

You think?

She told me she wanted to refer me to the surgeon who covered for Dr. B when he was out. This doctor was in the next town south of us; about a twenty five minute drive. She thought he might want to go through the original incision and take out the hematoma. It was red, warm to the touch and very hard.

She and the nurse left the room to make some calls. I was told to not put my shirt back on just in case the surgeon wanted pictures. Nice.

They came back less than ten minutes later and said I should make my way to Auburn, where Dr. J was waiting to see me. They asked me if I had someone who could drive me.

I’d called my mom while they were making their own calls. She’d mentioned a dentist appointment in town. I told them I’d call my husband and see what we could do.

I left with the name, number and address of the surgeon in Auburn.

I hadn’t made it out of the building when my phone rang. My mom was calling to say she’d cancelled her dentist appointment and she was on her way to pick me up. She’s definitely earning her Mother of the Year status.

Upon examination, the new surgeon declared that he wanted to do surgery that day. He said he wasn’t sure where the blood was coming from but it had found the path of least resistance for exit. Blech.

I was prepped for surgery, we waited and then waited some more because I’d had a honey bun and some tomato juice at 7:30 that morning since I didn’t KNOW I’d end up having freaking surgery that afternoon.

We also had to wait because I was an ‘add-on’ to the schedule and the doctor already had to do a gall bladder surgery and a bowel surgery. Shudder.

The surgery itself took about a half hour and I was home by 5:30 that afternoon.

And honestly, it feels so much better now. The hard hematoma is gone (though there is still a bit of swelling around the incision…) and I’m on the mend.

Tomorrow we’ll see if they’re willing to start chemo five days after surgery.

I will say, though, that bleeding from my freaking nipple is definitely the grossest thing I’ve experienced so far. Tom, because he’s a funny, funny guy, said I could nurse a vampire baby. Ugh.

Wednesday, October 11, 2017

Chemo Class

I had an appointment yesterday at the cancer center where I’ll be getting chemo treatments for the next, oh, five months.

The appointment was with the nurse who will be administering the chemo. She’s very nice, seems to like her job, was incredibly kind to all the patients in the room where I meeting with her.

She went over all the side effects associated with the chemo I’ll be receiving (Adriamycin/Cytoxan for the first four treatments over eight weeks and Taxol for the last twelve treatments, for inquiring minds…)

Oddly (or not) the side effect that bothers me the most is diarrhea. I mean, yeah, we all poop but…ugh. The thought of having uncontrollable diarrhea is quite distressing.

In fact, this is on my mind way more than the more common side effect of hair loss. I don’t mind sacrificing my hair in hopes of gaining decades with my girls, husband, family and friends. Nope, the hair will grow back. And as of right now, I have no plans for getting a wig. Heck, most days, my own hair drives me crazy enough that it ends up in a ponytail about two hours after my morning shower, whether I blew it dry or not. So, no wig, unless it comes pre-ponytailed.

Now, logically, I know that the embarrassment of pooping my pants during a bout of diarrhea will fade but it just sounds so very awful. I also know there are meds I can take which should minimalize the duration and severity of diarrhea. I just keep thinking about having to go during the twenty minute drive home from work where there are cornfields and, well, more cornfields. Unless I decide to put a spare roll of toilet paper and some wipes in my car, I don’t think I’ll be pooping in any cornfields. Those leaves are pretty rough.

I know that poop can be cleaned up but ick. It’s just all so gross and demeaning.

Alas…if it happens, it happens. The only way to get to the end of treatment is to go through it. Baldness, poop and all.

Tuesday, October 10, 2017

A Toothy Tale

Olivia had an appointment with her dentist last week for a cleaning. This led to another appointment in November for a couple of fillings. Yes, we do brush her teeth, yes, she uses a fluoride rinse and still…cavities.

She also has a tooth that’s been lose FOREVER, so long, in fact, that the permanent tooth is coming in BEHIND the one that won’t fall out.

See this chart?


It’s the tooth on the bottom left that has a number 8 on it that’s being stupid and not falling out to make room for the permanent tooth. The baby tooth has just sort of fallen over and refuses to move.

Last night when I got home from work, she informed me that a new tooth was loose. The newly loose tooth was the one right behind the insane one, the one with the number 6 on it on that chart above.

This tooth had already been crowned at one point in O’s long-lasting relationship with her dentist. She pushed it a bit to show me that it was loose and we went about her evening routine of me yelling at her to write her spelling her words, her yelling at me that she IS writing them and then me hissing at her to prove it and write the stupid words!

Ahem. That was a bit of a derailment. Sorry.

Since it was Monday, we headed to my mom’s. Alyssa plopped herself in front of the television to watch the season premiere of season 4 of Z Nation. I sat at the kitchen table with my mom and one of her sisters.

Olivia stayed with us and ate some strawberry shortcake and complain about her newly loose tooth. She showed it to my mom. My mom wiggled the tooth a little for Liv, made it bleed, grossing Livie out when she (Mom) showed Liv the blood.

Olivia insisted on rinsing her mouth out and then, five minutes later, she handed me her silver tooth. Ick.

She showed my mom the space where the tooth had been and a bright white new tooth was already right there, ready to take the crowned ones place.

She was so excited to go home and show her dad and to put that tooth under her pillow for the tooth fairy. She woke up at five this morning looking for the baggy her tooth had been in.

The tooth had been replaced by cash and a note from the tooth fairy.

Bless my sweet girl, she loves those notes from the tooth fairy more than she cares about the money. She didn’t even count it. She tossed the $4 on the counter and unfolded the note, scanning it and then looking up at me in wonder was she read the note.

I love Olivia’s imagination. I love that she believes in magic and the tooth fairy and even if she is a little skeptical, she wants so badly to believe that I let her.

She’s still got eleven baby teeth to lose…yikes and yes, gross. But I will write those notes for the next eleven if I get to see that look of joy and awe on her face each time she reads one.

Oh yes, by the way, having eleven baby teeth to lose at almost eleven years old means she’s dentally delayed. Alas, she and her sister got that awesomeness from me. I was always severely dentally delayed. Whatever. At 46, who cares, right? And now that Lyss is 14 and about to be relieved of her braces, she doesn’t care either.

Here’s to going broke all in the name of the tooth fairy!

Monday, October 9, 2017

Apple Fest

On Saturday on our way to the grocery store, my mom invited me and the girls to join her in a visit to a nearby town that was having its annual Apple Fest.

It sounded like fun so the girls and I said, “Let’s do it!” and plans were set.

When we got home that afternoon, I informed Tom of our Sunday plans and he mildly wondered at the last-minuteness of it all.

I thought about it for a few seconds and then mused, “Well, you know, I probably only have two more good weekends before things start going downhill again. I mean, I start chemo in nine days and who knows how it’s going to affect me? So we have this weekend and next. And since the weather is so beautiful, why not?”

He wasn’t actually looking for a reason not for us to go, he just worried about me tiring myself out. But I’m feeling so much better today and even last Monday and I wanted to enjoy the time with my mom and my girls.

It was CROWDED. I swear, there were more people there than are usually at Cedar Point on a Tuesday in the middle of summer. But like I said, the weather was great and it was a festival in October, why not be out and about?

The bees were out in full force too.

We shopped the booths (I bought a jar of ‘smelly jelly’ that is scented with lavender, I’m putting it by my bed.) We looked at awesome slouch hats that my mom thinks she can make for me once my hair falls out.

We watched a forty-five minute musical show with high school students that was amusing (at times) and about three songs too long.

Alyssa got a wooden ‘flute’. It’s a recorder and she told us no fewer than five times how much she HATES it when people call recorders flutes. Ha. Poor misunderstood flute player.

Olivia got a mermaid necklace that she immediately put on and declared that whenever she wears the necklace, she’s a mermaid and when she takes it off, she becomes human again.

Alyssa told her that doesn’t make sense since she was walking around on her TWO FEET while wearing the necklace.

I told the teenager to give the ten year old a break and stopped to buy some caramel corn.

Unfortunately for me, the long-ass line for the caramel corn was not worth it because the caramel was slightly scorched. Just enough to make it less delicious than it might have been had it NOT been burned. Though on the bright side, I bonded with a mom of three who was in line behind me for the caramel corn. Her kids were probably six, five and three. And they were driving her crazy with their tussling. I turned around when she told them to stop acting like hooligans.

I told her, “I have to remind my two to stop being lunatics on an almost constant basis.”

She laughed and said, “I just want them to pretend I’m a good mom while we’re in public.”

I commiserated with her. “I tell mine all the time to stop making me be mean to them.”

Anyway, for all the downs there were way more ups and I’m so, so glad we went. Even though Olivia complained about 80% of the time and Alyssa complained the other 20%.

I did inform them as we walked the fifty-two miles to the car (did I mention that it seemed like the entire population of Chicago descended upon Kendallville yesterday?) that next year, Gram and I are going along.

They both argued vehemently that they did NOT complain that much and why would we punish them so much as to make them stay home with their Dad?

As much as I love those two, I admit to doing a lot of eye rolling when they’re not looking.

But hey, yay apples.

Friday, October 6, 2017

Homecoming - Freshman Edition

Alyssa is taking in all the fun that is high school. I’m pretty sure she’s enjoying marching band even if there is the occasional grumble about football games and uniforms and ‘dinkles’ (the UGLY white shoes the band members wear when they’re marching.)

She decided pretty early on that she was definitely going to the homecoming dance and managed to convince most of her friends to go with her as a group. There were probably five girls who met outside the school last Saturday night.

A few weeks before the dance, I asked her what dress she was going to wear.

She said she didn’t know.

We looked at her current dress collection and she told me that the pictures her friends were sending her were much more fancy than anything she had in her closet.

So…we had to go shopping.

Unfortunately for me, she didn’t decide that none of her ‘non-sparkly’ dresses would do before I had my surgery.

So eleven days after surgery, my mom drove us to town and we started looking for dresses.

I declared that I absolutely was not up to going to Fort Wayne and tackling the mall. I was still in some pain and the bruising and swelling on my left side were still very much in attendance.

We started Kohl’s. There was nothing there that even came close.

Alyssa didn’t know exactly what she was looking for but she knew Kohl’s didn’t have it.

We decided to leave the tiny town of Angola and headed to the similar sized Cold Water, Michigan, only about a twenty minute drive north.

We went into Younkers, a store similar to Kohl’s and yep, their stock was similar too. Nothing in the line of sparkly semi-formal dresses for the teenage set.

As we drove away from Younkers, I saw another shop tucked away a few door down. It was called Sassy’s Closet. I know, very cutesy, but we decided, what the hell, let’s stop and see what it’s all about.

It was a consignment store. There were a bazillion dresses in that store, all probably worn once and then given away/sold to Sassy for resale.

We hit the jackpot!

This adorable little dress right here?


$18.

I know!

It fit her perfectly, she felt beautiful in it and finding it meant I could be done shopping. Win, win, win!

The afternoon of the dance, Lyss let me curl her hair and put a loose Dutch braid in at the top, pulling back her shorter layers.

Then she did her makeup and nails, put on a necklace and bracelet.

We discussed shoes for all of five seconds, at the end of which she told me tersely, “Mom. I’m not wearing heals.”

Okay, fine. Whatever. Be smart and save your feet the torture.

The dance started at 8pm. We left the house at about 7:15 to meet some of Alyssa’s friends at the park to take pictures. Everyone was so lovely and sparkly.

She reported that the dance was a lot of fun. Apparently, a senior with a stuffed monkey who waited outside with Lyss and three friends for a fourth (fifth?) friend to arrive paid for all their tickets. Now that’s a big spender. His date was already inside waiting for him. Alyssa declared she was going to pay him back for her ticket.

After the dance, Lyss spent the night with her friend Amelia, which meant I didn’t have to stay up late and wait for her to call me to go get her. That’s another big win in my post-operative book.

I love that she’s getting to have these experiences, that she’s embracing everything that’s coming her way. I love that she’s got really good friends, does well in school for the sake of doing well and is still sometimes very much my little girl.

Thursday, October 5, 2017

In All Fairness - Doctors Are Human Too

Each time I’ve told the story of my diagnosis, from the day I mentioned my breast pain to my family doctor to the day I went to my gynecologist, I feel kind of bad for my family doctor.

Having recently returned to work, everyone was kind and welcomed me back, telling me how great I look (I still have hair…for now) and how great it is to have me back.

One particular co-worker who happens to also be a patient of my family doctor, Dr. T, asked me, “Aren’t you so mad at Dr. T?”

I thought about it.

I realized that in the telling of my story, I’m putting him in a bad light. I mean, I usually say something like, “Back in late June, I was at my family doctor’s office and mentioned the pain in my left breast. He felt around a bit, through my shirt and bra, declared he didn’t feel anything, said that I’d had a clear mammogram in April and told me we’d just have to see if the pain went away on its own.”

That sounds bad. That sounds almost negligent.

But it’s also not fair to Dr. T.

When my co-worker asked me if I was mad at him, I realized that no, I’m not mad at him.

See, I was there that day to talk about pain in my stupid left foot. I mentioned the pain in my breast (again left side…hmmmm?) almost as an afterthought, just before he walked out of the room.

When I went back to my gynecologist a few weeks later, I was there specifically for the pain in my left breast. It was not an afterthought, it was not a, “Hey, by the way, while I’m here…” moment.

My gynecologist, Dr. W, took me more seriously than Dr. W because I was taking myself more seriously this time. And let’s be honest, gynecologists do tend to understand women’s health/bodies better than your average general practitioners.

And heck, my stupid tumor was so deep that the radiologist who came in to insert the wire that would guide my surgeon in removing the tumor couldn’t even find it at first. I told him he had to push really hard to see it. Dr. W has very large, strong hands and had to push really hard to feel ‘thickening’. Even he never actually felt the tumor. He just didn’t like the feeling of the thickening which is why he sent me for the ultrasound the very next day.

I really can’t blame Dr. T for not feeling that thickening several weeks before Dr. W did, especially when he was trying to feel it through several layers of fabric.

We all do the best we can, even doctors.

I was VERY lucky. I was persistent (because my pain was persistent and wouldn’t be ignored) and I followed my instinct when it was screaming at me that something was wrong. I went from Dr. T to Dr. W not because I thought Dr. T was incompetent, but because I thought Dr. W might have more experience with this sort of thing and in the end, I was right.

And again, I was so, so lucky that we found the cancer so early that it’s still stage 1 and hasn’t moved beyond that one very deep and yet very painful self-contained tumor.

I’ve had such amazing medical care in the wake of my diagnosis that I can’t find it in myself to be angry at one doctor who was probably very busy, might have been distracted and who’d been kind of blindsided by the mention of pain when I wasn’t even there to discuss that particular pain.

Wednesday, October 4, 2017

Once Again - My Hero

Today is our anniversary. Tom and I got married (maddied? MADDIED!!) fourteen years ago today. We stood in front of our closest family and friends and promised to love one and other in sickness and in health and blah blah blah.

And here we are, fourteen years later, loving each other in sickness.

Can I just say how amazing this guy has been these past six weeks since we got my diagnosis? He has been a rock; a laundry washing, dinner cooking, dishes doing, yard working rock. He’s continued to do everything he already did around the house and yard and has taken on about 90% of what I once did around the house. (Please note I didn’t add the word yard to my own sentence. I’ve never been one to do much yard work in our 14 years of marriage. Please don’t judge me too harshly.)

The first few days after my surgery he was very much on top of making sure I took my pain meds. By Friday, when I’d decided I wasn’t taking the prescription pills anymore because they made me feel worse than the pain of surgery, he respected my decision and just continued to offer food and a constantly full pitcher of water.

Each time I’d wake from a snooze, he’d be nearby, asking if I needed anything.

There were a few times I’d wake up from a nap in the recliner and find Tom on the couch, snoozing too. I find something comforting in the fact that he wanted to be near me even while I slept the morning away.

He’s gone to doctor’s appointments with me and waited over an hour for a fifteen minute appointment. This is a guy who HATES waiting for other people to deign to present themselves to you. He’s done this because even though he hates waiting, he doesn’t want me to have to wait alone. He waited in the hospital through two surgeries and endured countless visits with my dad because, well, he wanted to be there for me.

While getting a cancer diagnosis sucks, I feel so lucky to have this guy by my side as I face treatment. He’s being strong when I can’t. He’s making dinner when I need to rest. He’s paying the bills while I sit on my butt and heal. He’s loving me through it all and I can’t possibly ask for more than that.

And we have all the faith in the world that this is a blip in our lives and we’ll find our way back to loving each other in health instead of in sickness.

Tuesday, October 3, 2017

Mrs. Dr. Teacher

During my time off, I made my way to the girls’ school twice to meet with O’s teachers. The first meeting was, well, sad. I kind of went over a couple of posts back.

So we’re now over a week into the new class situation and…Olivia is thriving.

Before we settled into exactly what her new schedule would look like, I was invited back to the school to meet with Dr. C., the teacher who would be undertaking Olivia’s transition.

This woman has a PhD in special education and curriculum. She’s amazing.

In just over a week, she’s managed to get Olivia to talk to her, to sit at her desk and do her work with minimal supervision and while she’s not actually speaking to her peers yet, Liv will smile at them and wave when they say hi. She’s been doing this for a couple of years but not consistently. Apparently, it’s been more consistent in the past week than ever before.

The weeks before this change, each day I’d open Liv’s agenda with dread, worried about what her teacher might have written this time about her behavior/lack of motivation/how much homework she’d brought home.

Last week, there was nothing but praise in her agenda. Each day there was something about, “Olivia worked very hard today! Great job.” And “Olivia used her words very well today.”

Her homework for the week comes home as a packet on Monday and we have specific work to do each day and then send the entire packet back to school on Friday.

Best news of all…yesterday, after my first day back to work, I sat down with Liv to help her with her homework (by help, I usually mean cajole, beg, insist, force) and while I sat there, she wrote her spelling words twice with very little prompting from me. Then, she turned the page and stared on the math homework. She answered probably 10 out of the 12 problems by herself. I had to help with a couple because the question was weird to her. But this is the first time EVER that she’s been able to self-motivate to get her homework done. Do you know how great this feels? I just…I can’t even describe it. She did her homework mostly by herself! She did the work. She did the writing. She answered the questions. She KNEW the answers without much help from me.

I’ve always known she’s smart. She’s got so much knowledge locked up in that brain of hers and something about Dr. C has helped Liv unlock her brain and let out a little of what she knows.

I am in debt to this woman after just a week of working with my girl. She’s found the key to Liv’s brain and I will forever be grateful.

Monday, October 2, 2017

All That Time Off

One might wonder what I did with myself during the last four weeks as I recuperated from surgery and planned for another.

One might think I sat around and napped all day, binge watched three seasons of The Great British Baking Show and ate chocolate covered cherries.

One would be half right in thinking that.

I did do the above things part of the time. But I actually managed to attend several meetings with teachers at Olivia’s school, went to the county fair with the girls (just six days after surgery, go me! Mother of the freaking year, right here. I’m dusting off a place for the trophy as soon as I get home.)

I attended a football game at which Alyssa performed with the marching band in the halftime show.

I took Alyssa shopping for a homecoming dress (we found such a great dress!) and I didn’t have to spend a fortune on it. That’s always a positive.

Tom and I also started walking a little. Not too much, I mean, let’s not be crazy but just enough to keep the blood pumping. Each time I’d tell him I was going out to walk, he’d tell me to wait a minute and then he’d join me. What a guy, right?

But seriously…he’s been amazing. Honestly, I should stop here and give him his very own post because this guy has been such a hero through all this. And I know we’re just getting started.

But as of today, I’m back at work! Wheee! Except, maybe that should be a whew. I’m kind of tired after working eight hours. I should sleep well tonight.

Wednesday, September 20, 2017

Meeting O's Teachers

It must be a few weeks into a new school year.

Why is that? Because I got a call and a note that Olivia's teacher wanted to meet with me. I knew what was coming. I mean, she's in fourth grade, we've been through five years of school before this year. Each year, it takes at least two months for Olivia to make a connection with her new teacher. And yet, each year, about four weeks into school, her teacher contacts me and requests a meeting.

Of course I agree. It's what I do. I always want her teachers/aides/principal to know that we're all on the same team. We're all on Team Olivia. We all want the same thing. We want Olivia to succeed at school.

The problem is, each year she had a new teacher, a new classroom, new things to learn. And it takes her time to connect with each new teacher. Until she makes the connection, she just sort of sits there in class, a lump, making a mess of her papers, ignoring questions or just looking at the teacher like she doesn't speak the same language.

So her teachers always want to know from me how they can motivate her.

And I always respond with, "Good question. If you figure it out, share it with me and I'll incorporate it at home."

No. I don't actually say that. I say, "Please know that I understand your frustration. What you go through at school is mirrored at home. I go through the exact same thing each night that she brings home an hour plus worth of homework."

At that, yesterday, her teacher told me, "I feel so awful each afternoon when I see how much work she's bringing home because none of the other kids bring home that much homework. In fact, last night, no other kid in our class had any homework."

Olivia and I did homework the previous evening for an hour and fifteen minutes.

The work Olivia brings home is work she's supposed to do at school. She's given ample time to do the work at school but she just...doesn't. If she doesn't have an adult sitting next to her, she won't work. She will doodle all over the papers she's given. She pulls the lead from her pencils and then has to get up and sharpen the pencils (she's diabolical, if only she'd use her genius for good instead of evil.)

We talked. We told stories. Attending the meeting was her typical classroom teacher, Mrs. K., her special ed. teacher, Mrs. B., and the principal, Mrs. R.

After about twenty minutes the principal asked the director of special education to join us. She listened to the frustration Mrs. K. experiences with Olivia.

She asked if Liv is pulled out for any of her classes. Mrs. B. said that Liv is not, she stays in the typical classroom and gets and aide if an aide is available, which is not always.

The director suggested that we increase O's services, which obviously means amending her IEP to include pull out for at least a few subjects. They asked me if I was okay with that.

I reminded them that she'd been pulled out for a few subjects back in second grade and for a bit of third grade and did well with that. They said that her success with that was the reason they'd stopped pulling her out, they wanted to see if she could succeed as well while remaining in the classroom.

Yeah, obviously not.

So we're amending the IEP. She's going to go to a 'small classroom setting' class for Language, Math and writing. She's going to continue to go to lunch, specials (gym, music, library, art), recess, science and social studies with her typical classmates. This will help her maintain the socialization she needs.

I reminded everyone in the meeting that Olivia has come so far. Back in first grade, she wouldn't eat lunch with her classmates. She had to sit at a table by herself just to take a few bites of her lunch. We got her past that. She now sits with her classmates and eats her entire lunch everyday.

I also reminded them that none of them have ever worked with a student with 5p- syndrome. I wasn't trying to make excuses. I know that O can be a pill to work with. But most of the time, I truly don't think she's doing it on purpose. Yes, she's indulged and spoiled but we make her work at home too. She mostly feeds herself these days. She ties her own shoes. She wipes her own butt (that is a HUGE thing in my life, just saying.) But emotionally, she is not ten years old. She's more like six. She can't remember the things her teacher tells her at the end of the day. I need notes from the teacher so I can help her do her homework. She is still growing, still maturing, still learning. She will never stop learning, thank goodness. But she will always learn at her own pace.

I definitely think we should continue to challenge her but we should also be understanding that sometimes, she just isn't going to be able to do the things her typical peers can do. It's just a fact. It doesn't mean we're going easy on her. We're just adjusting things to her level while still expecting her to do the work.

And yes, I did get off my sick chair (I spend A LOT of time in the recliner as my bruises heal) to attend this meeting. Someday, if Liv ever reads this, I hope she can comprehend how very much I love her. This girl and her sister...they are everything to me.

Tuesday, September 19, 2017

Off the Grid

It's been a while. I didn't mean to disappear but apparently, I don't recover from surgery very well.

So, to recap the past couple of weeks.

I got the cancer diagnosis on August 21. That was a Monday. I met with a surgeon on Thursday, August 24. He sent me for an x-ray and blood work that very day and scheduled an MRI for the following Wednesday, August 30. I met with the surgeon the day after the MRI. He told me that the MRI came back with good news, there was no sign of cancer in my lymph nodes. At that appointment, he also told me he had an opening for surgery the next Tuesday, which would be September 5.

I said, "Let's do it."

And so we did. Tom and I got to the hospital at 10am on Tuesday, September 5. Surgery was scheduled to start at 2pm but the surgeon wanted the surgery to be wire guided, so we got there early so they could insert a wire into the tumor so the doctor wouldn't have to cut more than necessary. The wire was inserted using an ultrasound for guidance. The radiologist who inserted the wire had a hard time finding the tumor. I told him it was pretty deep and he'd have to push harder on the ultrasound wand. They got the wire inserted and then I had to have some dye injected that would make it way to my lymph nodes. Even though the MRI showed no signs of cancer there, the surgeon planned to take out a couple of them for testing.

At about 1:00 my mom showed up to wait with Tom and relieve him so he could go home and wait with the girls when they got off the bus. At some point, my pre-op nurse gave me a Xanax, so I was quite relaxed before surgery. I dozed while waiting to be taken back to surgery. I remember being moved from the pre-op room to the operating room but once I was on the operating table, I remember nothing until I was back in the recovery room.

I evidently also take quite a while to wake up from anesthesia. It makes me very nauseas and so the post-op nurse kept pumping me full of anti-nausea medicine, which also made me groggy. The surgery only took about an hour and a half but I wasn't ready to go home until about 7:30 and even then, I was still a little sick to my stomach and VERY groggy. I slept the entire drive home and vaguely remember Tom and my mom helping me up the stairs to our house. I collapsed in the recliner and do not remember Tom helping me move to the couch to sleep that night. I do remember him giving me the first of the prescription pain pills. Yeah, more on those vile things later.

The next morning I felt better. In pain, but better. I woke up in time to hear Alyssa yelling at Olivia at the kitchen table, where O was being a brat about her hair. I felt good enough to go in and braid her hair for her, which made her happy and made her sister seethe. Alyssa is all about helping and making my life easier. Olivia...is not so much all about that.

My doctor called on Thursday after the surgery to tell me that pathology came back and they got all the cancer. It was contained to the one tumor (Pete) and my lymph nodes were clear. So yes, all good news. He asked me how I was feeling and I reported that I was doing okay.

I saw him for my post-op appointment last Thursday, September 14. After waiting with Tom in the exam room for an hour and fifteen minutes (much to Tom's disgust) the doctor finally arrived. He noticed that I moved slowly from the chair to the exam table. When he first looked at the site of my incision, he flinched a little and said, "Wow, I didn't expect that much bruising. Were you this bruised when we talked last week?"

I shrugged and said, "Well, yeah."

He asked Tom, "Is she always this stoic?"

I joked, "Eh, he probably thinks I'm pretty whiny."

Tom replied, "Not about this, I don't."

The doctor declared that I am much more bruised and swollen than he'd anticipated and decided I need to be off work another two weeks to recover. I appreciate this because I still tire VERY easily and I admit to still being in some pain.

But in the long run, I've been very lucky. The worst news I've had yet is the initial cancer diagnosis. The good news is that we caught it early, it's contained to the one tumor and hasn't spread. It is stage one.

I meet with an oncologist next Tuesday to discuss further treatment.

Today, I had a meeting with Liv's teachers, which means I've been able to think about something other than my own health/pain/recovery. That's always good, even if it is about how to motivate a child who doesn't feel that learning for it's own sake is motivation enough. But that's a post for another day. Tomorrow, maybe?

Sunday, September 3, 2017

Prep

How does one spend a nice long weekend before heading off on a Tuesday for surgery?

Wait, did I mention that I'm having surgery on Tuesday? I am. I went to see the surgeon last Thursday after my MRI on Wednesday, at which I was dubbed the valedictorian of MRI patients. So, sure, I might have given myself that title but the technician told me I was the best MRI patient she'd ever had. Even if she tells all her patients that, I'm taking the valedictorian title because, well, I can.

So the appointment with the surgeon on Thursday started with him telling me that the MRI results were good. It showed the cancer isn't in the lymph nodes. That's excellent news.

Then he asked what I thought of surgery on Tuesday. They're going to go in and take out the mass and leave as much breast tissue as possible. There will be a pathologist in the operating room to check the nodes. While the MRI showed good news, they want to make sure while they've got me on the operating table. I do like the idea of only having to be cut once if possible.

So this weekend has been one of prep. I have boatloads of laundry. My bathroom is cleaner than it's been since I moved into this house seven years ago. Yes, I'm kind of ashamed of that. Alyssa, bless her sweet heart, cleaned her bathroom too.

Tomorrow I have to wash the sheets on my bed and shower using Dial antibacterial soap. I am also going to mop the kitchen floor.

I've baked two batches of cookies, apple turnovers and cherry turnovers and blueberry muffins. Apparently, when surgery is looming, I bake.

I still need to clean the half bathroom and someone (Alyssa?) needs to vacuum. I've brought down the movies I might want to watch while I recover from surgery. I would like to dust because, yeah, my house seems filthy as I look around at everything I've put off thinking I have all the time in the world.

And I have kids and a husband to love. Honestly, I'm a very lucky gal.

Thursday, August 31, 2017

Well Then

Last night I made my way to the girls’ school where I sat in the choir room with a bunch of other parents and listened to Mrs. F talk about a trip to Chicago that she’s planning for the high school choir.

It sounds like a lot of fun. I wrote a check for the first part of the payment for Alyssa to go on this trip. I filled out the forms and signed the permission slip. I even expressed interest in being a chaperone.

While there, I was able to talk to another mom, Mrs. Porch actually. Remember her? She has two daughters, one of whom is in Alyssa’s class, the other is in Olivia’s class.

We compared notes on how much we’re hating fourth grade. Not because the teachers aren’t awesome, they are amazing. No, it’s because fourth grade is hard and our daughters, Olivia and Delaney, simply don’t care.

They couldn’t possibly care less about whether one number is greater than the other. They don’t care about interrogative sentences versus exclamatory statements. They don’t care.

Which is why it’s so hard to get homework done each night. These girls don’t care and so we parents have to drag every single word, number, sentence, answer out of them.

And it’s hard work…for us.

But there is comfort in knowing that Olivia is actually just like one of her typical peers.

I guess the old staying is true…misery does love company.

Tuesday, August 29, 2017

Fourth Grade So Far

Fourth grade is kicking my butt. I don’t know if it’s kicking Liv’s butt or not, she’s a tough nut to crack sometimes but I’m about done with it and the girls have been back at school for eight days.

Last night we struggled through an hour of homework. That’s ONE HOUR of homework, in case I stuttered back there.


Now, to be fair to the teachers sending home the work, if dear sweet Olivia had let her teacher help her with two pages of math work, she might have only had forty minutes of work instead of an hour but alas, my stubborn love came home with a yellow letter stating she wouldn’t work with her teacher on her math work. So we had to do it at home.

Ugh!

I try so hard not to get frustrated with her and lose my patience. I mean, I don’t think she does this shit on purpose but sometimes it’s hard to not take it personally when I’m sitting at the kitchen table from 6 to 7 ‘helping’ her with her homework because she can’t be trusted to do the work herself. And honestly, I’m not sure she CAN do it without prompting and help and near constant cajoling and reminders of the math rules she’s working with and on and on and on.

I did tell her, quite sternly, that when her teacher offers help, she HAS to accept it. She HAS to do the work her teacher is putting in front of her. She HAS to interact with Mrs. K.

It’s only the second full week of school and I know that Liv takes time to bond with her teachers/aides/therapists but damn it, she’s ten years old and in fourth grade, it’s time to pull it together!

So easy for me to say, with my (fairly) typical brain and my 46 intact chromosomes.

And that’s why I try so hard to be patient and kind and remember that more often than not, she’s doing her best. Sure, she’s stubborn and yes, maybe a little lazy. And she might very well be manipulating me all the way around the block but who really knows?

So we’ll keep muddling through and figuring it out and hopefully, not doing homework for a freaking hour every night for the rest of this school year.

Monday, August 28, 2017

Cranky Pants

Guess what? I was not the one wearing the cranky pants this past weekend. I know! Big surprise, right?

In fact, one of my aunts (I have A LOT of aunts) told me I am one of the most positive people she’s ever know. Yeah, put that in your cranky pipe and smoke it.

No, the cranky pants this weekend were worn by one Miss Lyss. She was tired. She was overwhelmed by school and marching band and life in general. She missed our house and didn’t want to wait while her sister swam what was probably her last swim of the season. Oh, and she was hungry (Lyss, not her sister, who just wanted to swim.)

Let’s back up just a little. See, on Friday evening, Lyss’s school had its first football game. Alyssa plays the flute in the marching band so she had to be back at the school at 5:30 that afternoon. Thankfully, Tom made her eat something before I got home because I got home at 5:00, had time to pee (hello, it’s what one does when one gets home from work, just saying…) and then I hustled her back out the door at 5:15 to take her to the school. Oh wait, between walking in the door, peeing and then walking back out the door, Alyssa asked if her friend Tessa could come back to our house after the football game. I used the few minutes I had between suggesting the Lyss wear shorts instead of running pants under her band uniform to text Tessa’s mom and see if the overnight plans were okay with her.

The football game started at 7:00 and she didn’t call me to go back to the school to pick her and Tessa up until 10:30. So it was a LONG night for her. I get that.

Then they had to be up by 10:00 because T’s mom was picking her up at 10:30ish. So insert tired emoji here.

After Tessa left, Lyss had to pack some overnight supplies because she, Livie and I were heading to Battle Creek, Michigan with my mom to stay with my aunt (not the one who told me I’m a positive person) and all the other aunties, a few cousins and my grandma.

My aunt L was throwing a “Tea Party” for all of us, but the guest of honor was my cousin’s daughter, Sabella. She needs to visit with all of us more and it was great fun.

Though there were times when Alyssa was bored. I understand that. There was a lot of talk and visiting amongst the adults. The only kids were Alyssa, Olivia, my cousin E’s daughters, who are eight and not-quite-two. And of course, Sabella, who is eleven.

So boredom was to be expected. But it’s something one puts up with to hang with family. Sorry kiddo, family is important.

By Sunday afternoon, though, Lyss was done with tea parties and visiting and just wanted to go home. Though isn't she adorable in the hat she made for herself for the tea party?


And home we went…after Olivia gone one last swim in.


I mean, it’s late August. There very well may not be any more chances to swim this season. The local pool has been closed for a couple of weeks. The nights are getting cooler which means the lakes are cooling off. Fall is right around the corner. Bummer for all of us, right?

I do understand, too, that she’s probably stressed about my health too. I am trying to be understanding of her stress, her tiredness, her anxiety, her school work load. I want to be understanding while still holding her to the standards of being a member of our family.

You can put on the cranky pants but you can’t complain about them non-stop. At some point, you just have to come to the realization that they’re itchy and uncomfortable and you need to change into something more soothing.

I promised her that next weekend will be a stay-at-home weekend and that the best part is that it’s a three day weekend for all of us. That helped her a little.

She is a teenager after all.

And for the record, she wasn’t cranky ALL weekend. I have photographic proof. See?