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Saturday, October 20, 2018

Adventures in pre-Halloweening


The Halloween parties loom, as they probably do for many of you, so we are trying to figure out who needs to be where and when, and ensuring that nobody goes naked. 

Dada: Do any of the kids even have costumes yet?

Me: Nope.

Dada: Do any of them want to be anything reasonable?

Me: Well, Damon wants to be Mario...

Dada: Oh, good, that's reasonable. Last I heard he wanted to be Kirby. I didn't even know what that is. *slyly* But I'm glad he doesn't want to be a vacuum cleaner. I think that'd be a sucky costume.

PaPa: Yeah, there goes his dirty mind again. I think that would have sucked. Dust off another idea...

Tuesday, October 16, 2018

Adaptation


You know that saying about how men keep everything in separate boxes with tidy labels and the contents of the boxes never, ever touch each other? And how women keep everything in one huge box with all the contents jumbled together, rubbing shoulders and rubbing off onto each other?

Yesterday I told a friend that I felt like my box was taped shut and then rolled down the stairs. 

Not as bad as this but rolled down the stairs? Yes. And no, I claim none of the credit for the movie or the video clip. That is not my box.

I suppose this post is just in case you feel like I'm always sunshine and daisies. While I am probably most of the time, I'm not always. Incidentally, some friends sent me some daisies and they were so cheerful. I was very impressed with their longevity, as well. 

My friends who are moms are some of the most adaptable people I know. Moms seem to be able to roll with the punches in an amazing way. I'm astounded how well things generally happen the way they're supposed to because once you add kids to a mix, you seem to end up with multitudes of schedule changes. Toss some doctors' appointments in there, sprinkle some play dates, oh yes- school conferences, part time jobs, there's a concert when again, and you can have a recipe for disaster. That's not even counting the adulting stuff you have to do like remembering car maintenance appointments, paying bills, getting laundry out of the washer and into the dryer, remembering the stuff we're out of that nobody has put on the list for the second week...

Here's the Moment of Humility: I understand my mother a little better now. 

She used to insist that if it wasn't on the family calendar, it wasn't happening. Drove me CrAzY. How can you be spontaneous if everything has to be written down in advance? Mind you, this was also pre-cell phones, which have completely changed the way people can interact. Gonna be late? Fire that short text saying so. Can't make it? Same thing. 

Pretty much if you have thumbs, everyone else can know the details of why plans are changing. Again.

Which is only part of why I've felt like I'd been in a dryer on the tumble dry setting. 

Last week my surgeon called with pathology results. The left side was completely benign, just dense tissue, which was what we expected, so thank you God for that! The right side had mostly clear margins except for the axillary (armpit) area, which is part of why radiation is still in my future. The tumor was a bit larger (2.5 cm x 1.5 x 1) than the MRI indicated (around 1.8 cm). This is not unusual as the pathology part is very precise whereas things can be a bit more elusive on an MRI. I just learned that, haha, so don't be giving me too much credit. The main tumor's edges were clear. Surgically speaking, we were supposed to be done.

Last Thursday I had my usual every-three-week infusion of Herceptin and Perjeta. I was told I am healing remarkably well. I apparently have an allergy to the nickel that is in some jewelry, as evidenced by an itchy rash around my neck from a necklace I'd worn for the first time a few days previous. My adorable doctor told me I was to inform Dada I needed gold jewelry for Christmas. Okiedokie! Sign me up! 

This Monday I met with the radiation oncologist who also was very pleased with how well I'm healing. It was three weeks to the day since surgery, and he said that radiation usually starts 4-6 weeks afterwards. He said I wasn't quite completely healed, but I looked right on schedule based on what he was seeing. And then he shut his eyes and said, "your port is on the right side." I said, "Yes, I know." He said, "it needs to be on the left side. I'll call your surgeon." I said, "I know he does surgery on Mondays and Fridays." He said, "good, maybe he can get you in on Friday and we can do the simulation* the next week."

Um.

Hiccup.

It's a hiccup. Some of you are yelling, perhaps in your head, "it's another surgery!" Yes. That's true. But it's one I've had before and know what to expect this time around. It's under general anesthesia and that means I can chitchat my way through it like last time and have absolutely no memory of the conversations. I'm truly not worried about it. I don't even remember having to sleep in a chair afterwards the last time. I am going to have the coolest scars when this is all said and done. 

The craziest part is that my shoulder ached more after the port surgery than anything hurt after my bilateral mastectomy. I suppose it's all about the positioning, but I still find it amazing. Again, now I know what to expect!

So I'm waiting for the surgeon's office to call to schedule me. I'm learning that like a watched pot never boils, a cell phone stacked on top of an opened planner never rings. It's okay. It's not a waste; my right side port has performed fabulously for five whole months. Five months of not needing sticked (except for a time or two) in my arms. It's been doing exactly what it was supposed to do, my good and faithful servant. 

I was initially relieved when I found out the port was on my right side. Yes, my seat belt lays directly across it when I'm in the passenger seat, but I drive a fair bit and thought it'd be worse to have it on my left side. Well, now it's going to be on my left side, but initially I hadn't known I'd be using a pillow anyway between the seat belt and my mastectomy incisions, so really it's not going to be a big issue. Whereas my mother and some of my good-things-come-in-small-packages Girlfriends sit on pillows when driving, I shove one under my seat belt.

Waiting is hard, so I get it as to that being one reason I feel so off. Another is scheduling anything around what you're waiting to hear about. Yet another is scheduling just about anything involving other people: a sweet friend from high school let me know through Facebook that there are cleaning services who clean for free if you show evidence from your doctor that you're undergoing treatment. I looked into it, discovered that there was a partner in my general area, gave them a call and set up a time for yesterday. However, life kept moving on and I also had to schedule the radiation oncology appointment for yesterday before the crew would arrive here. During the confirmation call, it became clear that they were coming earlier than expected and in fact while I was to be at the doctor's office, so Dada stayed home late to let them in.

Have I mentioned that our address is being changed over a period of two years from a county address to a city one since we are just inside the city limits? Even though we're not moving? Have I also mentioned how many people that throws off?

Apparently the crew I'd set things up with were looking for the new city address while our mailbox still boasts the numbers for the old address. Being on a tight schedule, they gave up and headed to their next stop- not that I blame them. We were in touch and tried to reschedule for today but their scheduler was dismayed to find that some of them are calling in sick and others are calling in with kids who are sick. I get it. Tis the season for germs, especially with the weather doing it's wacky let's-be-almost-90-and-then-drop-to-freezing-at-night-in-the-span-of-a-week trick. Bleh. We've rescheduled, not a big deal and certainly a first world problem, but the constant schedule/reschedule/"yes, you have to answer the phone sometimes so pull up your big girl panties already" was wearing on me. I'm a Hobbit with Wood Elf tendencies and I like to hermit once it drops below 70. Because it's cold. And I hate talking on the phone. We've covered this already. And emailing is no better as we have had the same email for almost 20 years and there are over 1000 unread emails in there. (And there goes my mother. Hi Mom!)

Again, it's not a big deal. It's a very nice gesture that has been delayed. Happens the world over. Just a hiccup. 

But winter is coming (ha) and I'm already feeling... not grinchy, not yet, but something. Maybe it's the hormones being out of whack because of the chemically/chemotherapy induced menopause. I've been getting angry over things that I should be able to brush off. I feel like all of the Thingz' tempers have been flaring faster than usual, too. Two of them have had either excessively difficult homework or what seems to them to be an overwhelming amount of homework lately, which every parent knows does not merely weigh on the child who does the assignments. Accordingly, we went nowhere and did next to nothing this weekend, partly for recovery reasons and partly because we rarely get to just stay home and play and relax. We needed the sleep and the space. But I don't feel like it restored us like it should have. 

I'm not sure what it is, but I hope it doesn't plan on staying. I feel like I could use a vacation, but I can't schedule anything until I know when the new port surgery will be. And I can't set anything up for the rest of this fall until I know when radiation will be, as in every morning or every afternoon- five days a week for a total of 33 times, which I don't know because that can't start until the surgery is over and I'm healed. 

Ring already, darn it. 

If I'm being completely honest, part of me is wondering if my surgeon is booked into back to back appointments today or if he is hesitating to call because he feels bad for making a mistake-ish. Yes, I realize I'm projecting, but it is possible. Surgeons are people, too, and while many do wonderful work I'm sure they don't all intend to have to do wonderful work twice. Kindness just about kills me, as I've mentioned before, and if he is all apologetic about going through this again, I'm hoping I don't start leaking and make us both feel terrible. Drat that Perjeta anyway. It's hard to have good feelings towards something that is helping save your life on a microscopic and therefore unseen level when the very obvious side effects are watering eyes and the need for Imodium within arm's reach. It seems to be much better than it had been when chemo drugs were also in the mix, thank you Jesus, but I'll hold my breath before I say things are back to normal. 

Ah. I get it now. 

"I hate waiting."

PS Sorry you're hearing about it here first, Mommee & Daddee; I've been trying to keep the dratted phone free! 

PPS Those of you who are participating in the BraBurningParty, it's ON unless you hear otherwise! If you can't make it and want to mail one to be tossed in the fire in your honor, let me know!

*Simulation: you guys, this sounds so cool! Apparently I lay down (lie down? whatever) in something similar to a bean bag chair which molds to me. The doc will put some wires on me that tell the computer to plot out a 3D image of me so that they can pinpoint exactly where the radiation needs to hit. I can't wait! It sounds fascinating! Then there is a verification appointment where they check out how the computer did versus the real me. The doc went over the short terms side effects and the long term ones, they will be discussing skin care because apparently you can't just use any old lotion, and he reminded me that multiple trials have proven that people live longer with radiation treatments than without. I'll have a total of 33 treatments: 28 to the chest wall and lymph nodes and an additional 5 just for my scars. Everything on this medical adventure has been interesting and the more questions I ask the more fascinating it gets. Our bodies are astounding, the science is so cool, and yay God for putting these incredible medical staff in my life when I need them!




Tuesday, October 09, 2018

Midges and ermagersh!


Since it is still 80+ degrees in Ohio, I had ample opportunity to hang out our bedsheets and another load of laundry today. I kept getting bitten by tiny little gnats? Midges? Small winged insects of malicious or perhaps merely hungry intent at any rate. It made me think of Merry's lament as the Hobbits are slogging through the marshes, "what do they get when they can't get Hobbit?"

Me, Merry. They get me.

BUT this blog is not all about just me, so here's one that you're going to hope I made up. I assure you, I am just as flabbergasted and revolted as you are and I really don't know how to articulate it. So I'm just gonna say it.

Liam was playing the euphonium.

In the bathroom.

😑

That's the only face I can imagine making, unless perhaps embellishing a bit by adding a hand across the forehead...

Granted, bathroom acoustics are fantastic. Yes, he was told to practice. My father right now is thanking his lucky stars that one cannot haul a piano into a bathroom. 

There just aren't words. Except that I have learned one thing. The answer to Captain Jack Sparrow's inquiry of "why is the rum always gone?" 

That would be "because there are children."

Monday, October 08, 2018

Boys, bugs, mums, and other assorted musings


No matter how big he gets, this kid is irresistible when he's sleeping. The camera loves him and somehow he is even more kissable when he's snuggled into a big chair. 




I often wonder how he's going to fit at, say, 17...

We had some insect adventures at the bus stop this morning. There was a two hour delay due to fog. Some of you are rolling your eyes, but I swear we've already covered this ground; we live out in the boonies and bus drivers probably can't see the kids, not to mention any deer, in fog you could saw through with a butter knife. It lays especially thick on the fields, some of which are being harvested. At any rate, it's rather pleasant to eeeeeease into a Monday...

So the sun was fully up and shining away by the time the Damonater struts down the driveway at 10 AM. Birds are twittering away, the squirrels are in full... uh, squirrel, and the bugs are zooming every which way. We had an overly friendly bee checking us out thoroughly. I've always tried to teach the kids to not swat at them, but to stay calm and remind the bee that they're not a flower. It must be confusing to find bright, colorful things that smell like... kids. Oh, never mind. You're not a flower. Got it. Moving on.

This bee was not easily convinced. We had been swatting a pesky mosquito which we both missed when I heard a buzzy drone in my left ear. Damon exclaimed, "bee!" so I ducked a bit and she headed around to my right ear. I felt like I was living that scene from "Robin Hood: Men in Tights" where they talk about, "I'm on the east side, I'm on the west side" that you can see here in case you need a fun distraction. I had nothing to do with either the original movie nor the video clip. Anyway, this bee was not to be deterred from her examination of us. Once she'd repeatedly zoomed around both my east and west sides, she headed for Damon.

He hunched his head down into his shoulders, clasped his hands tight and screwed his eyes shut. Right now I'm curious- is that the universal sign for "potentially stinging winged insect of undetermined malicious intent"? I think it must be. She gave him a complete thrice-over before landing on his forehead right where his bangs meet skin. She only stayed a few milliseconds but it was long enough for me to spin it saying, "awwww, she gave you a bee-kiss!" Off she zoomed, probably to go play amongst our crazy, leggy mums. 




The bee crisis averted, we then did succeed in pulverizing the mosquito that finally landed on Damon's shin. As the bus approached, an Asian beetle/ladybug imposter crashed our party and landed on Damon's backpack. I told him he had a hitchhiker who looked pretty confused about being on a backpack, and off she went with him onto the bus.

I can only imagine the adventures she will have today.

I keep forgetting to get the fall bin out of the attic so the kids can finish decorating, but we did get a good start:


For those of you who live where the weather is a bit more predictable in October than Ohio's weather is, I thought I'd enlighten you on why it is important to wear layers:


I snapped a picture of that after doing a double take when I looked at the weekend weather last week. Yes, those are snowflakes, sun, and rain all on Saturday, with a high of 83. Once again, Mother Nature said, "hold my beer." And while we didn't see the snowflakes, thank goodness, it did reach the lower 80's. In October.

I blame karate. Yesterday was the start of the fall dress code, which means full gis must be worn instead of just the pants, belts, and whatever karate-related T shirts you own. Naturally the first half of this week is going to be in the 80's. In October. 

Following the layering rule, this is what I strolled to the bus stop in today:




Yes, that would be a sundress under a corduroy jacket. Good thing we didn't pack them all up already, right, Mommee? I wanted something long and loose over my ACE bandages which are compressing my top half enough that I still look pregnant on my bottom half. The nail polish is Avon's Mudslide, just perfect for fall, and the boots were on clearance at Charlotte Russe several years ago. They make me feel really tall. I'm back in my bunny slippers now, but it was nice to clump down the driveway in the boots. Just gotta remember to watch out for those slippery acorns.

Enjoy... what is this, officially? Indian summer? Anyone?





Thursday, October 04, 2018

Intentioned snips and random snippets


The irony was not lost on me as I meandered through Walmart hunting front-closure bras for after a double mastectomy. I kept giggling wryly to Dada about needing bras for when I wouldn't have any boobs! Something's gotta hold all those bandages together before you can put clothes over them. How crazy life is.

                                     *****

Maybe breast cancer was one of God's ways to get an outlet to those of you whose love language is Gifts. Holy smokes, I continue to be blown away at the gifts that arrive. Currently I have three bouquets of sunny, cheerful flowers spread through the downstairs. Two friends made dinner for last night on top of an already stuffed fridge and freezer. My stack of cards overfloweth. My phone has been blowing up with texts...

I have three containers of chocolate chip cookies! If that isn't love for this Cookie Monster, I dunno what is. I am humbled by all of you and the ways that you care!

                                    *****

Tuesday was my follow up appointment with my surgeon. He asked me how I felt I was doing and looked, at least to me, pretty surprised when I chirped, "good!" I confessed that I hadn't believed him when he'd informed me that a bilateral mastectomy would hurt less than something done laparoscopically, but he'd been right. Everything I'd heard and read told me to "stay ahead of the pain" so I followed directions and took pain meds alternating with Advil accordingly. For four days. And then I didn't take anything at all. Because nothing hurt! Some friends are saying I have a high pain tolerance, which could be true, I suppose. Every body is different. I have no idea how that could be measured. What still strikes me as funny is that the sensation I feel most is the prickles that are just like when your breastmilk lets down. I have areas of mostly numbness, but the feelings that I do feel cracks me up. There's nothing to let down to anywhere else! 

Anyway. 

He looked over my recorded drain fluid numbers and decided the drains could come out. WOOHOO! For those of you who have never had a surgical drain, let me tell you what they do and why it's good fabulous to get them out. Fluid can build up after surgery and has no place to go without help. My cancer books said essentially "think 'turkey baster'", which didn't give me the correct mental picture, so I'll offer a little better version. Think 'small, turkey baster with tubes that get sutured into your body and dangle loosely in an attempt to be yanked at every opportunity" because that is closer to what they feel like. So you have these tubes coming out of you like the Borg and if you're smart, you take the advice about the $1.50 Lowe's nail apron and snuggle your drains down into the pockets. The nail apron also had long enough ties that I could cross them behind my back and tie a tiny bow in front of me, which made sleeping that much nicer as I didn't have to channel Samwise Gamgee: no matter how I lay there's a dirty great root sticking into my back...

A sweet person I met online even made a beautiful apron for my drains which she then mailed to me. I got to wear it for a full 24 hours before my drains came out. You guys, there is no end to the creativity and thoughtfulness out there. A total stranger made me something lovely to make something important and yet unpleasant somehow better. Find your Cranny of Creativity and use that as your ministry to others. I already said some of you are so good with the gifts. Some of you are amazing with the foods. Most of you are brilliant at texts. All of you are capable of great love even in tiny but not overlooked or under appreciated ways!

Stepping off my soapbox. So you live in dread of accidentally getting a drain hooked on something or reaching "wrong" and pulling these suckers out, right? 

Well.

Chalk this up under Things I Should Have Figured Out Had I Really Thought About Them: since those babies are sutured into you, that means there's some snipping involved in releasing them so that they can then be pulled out. My sweet surgeon did mutter something to himself about "that's in there tighter than I intended" whilst working on my right side, followed by a moment of sharpish digging. Then he looked at me and intoned, "now, these drains are a little wider on the inside than they are on the part where you see them, so ..." and I forget the rest of what he said because my brain was processing it and got as far as, "DUH, you dummy (meaning me, not him)" and then "so I guess I didn't need to worry about accidentally yanking them out" and "wait, that means it is going to hurt" all pretty much at the same time. I think I asked if I should take a deep breath (that's what they have me do as they access my port during IV treatments) and I'm fairly certain he said, "whatever works." So I suck in a big breath as he counts to three and what follows truly didn't hurt so much as feel weird, but the sound was exactly like sucking up the bottom of a milkshake with a straw. Sorry to those of you reading this in a public place if that made you laugh out loud and people are looking at you oddly. 

He heads over to do the left side and I frantically let Dada know I could use some cold, wet paper towels on the back of my neck STAT. Not so much the pull or the sound, but definitely the snippage. Is that a word? It is now. My stomach rumbled uncertainly and I felt like someone had cranked up the thermostat. The surgeon looked at me with his eyebrows up, I looked back from under one of my damp paper towels (because Dada is good at this game and I had one on my forehead, too), squeaked "good to go", breathed in, he pulled, and out came the second one. 

He gave me a few minutes to lie there with my knees up as he taped gauze over my drain-free holes which will seal themselves shut- all of this is so amazing to me- and asked if I was okay to sit up. I was, so I did, he said to keep doing what we were doing as everything looked like it was healing really well, and then he said that if I experienced any fluid buildup it would have that waterbed feeling. They can take care of that right there in the office via a needle inserted through my incision(s) which is/are numb anyway and suction whatever fluid out. Sorry, Daddeeeeee and anyone else who would have appreciated less is more...

He said to give it a few days for the drain holes to heal up before starting my stretching exercises which are apparently remarkably similar to exercises encouraged post-rotator cuff surgery. I teased that they probably are the same and that someone just changed the title on the booklet. He reminded us that compression is important so that the skin adheres well but to not be doing a ton of stuff up over my head quite yet as that would affect the pectoral muscles. I don't want to end up with T-Rex arms, but he said to wait a few days, not to not do that at all. He even said I don't need any more gauze/bandages over the incisions but to stick with the ACE bandage or compression shirts. 

Otherwise he will check on me in six months!

And that was that! So thank you all for the continued prayers, especially for those of you who prayed that the drains could come out! It is so nice to be able to lie on my sides instead of only my back. I slept in the recliner for about a week and it's so nice to be back in my comfy bed. 

My chest is tightly wrapped and I've been making comments about corsets and stays to Dada, who has been grinning while wrapping me. Yet another Thing I Should Have Figured Out Had I Really Thought About It is that with my chest wrapped so tightly, it looks like my belly is popping straight out. Stop right there, those of you saying, "what belly?" Just quit it. I am telling you that yes, I have one, and yes, it is out there, looking 4 months pregnant. This is not just me. This is lots of online ladies who've gone through this. Some of them have freaked out to husbands along the lines of "did they put my boobs in my belly!?" to which husbands standing out of strangling distance have quipped, "no, it always looked like that but you couldn't tell because your boobs were in the way." I'm serious. The Internet says so. It must be true. Sorry to those of you still reading in a public place. Keep the giggling outbursts to a minimum. People are going to think something is wrong with you. 

If you see me in one of Dada's button downs because I still can't do over the head shirts and I only own two button downs of my own, please don't ask when I'm due. Unless you're standing out of arm's reach. Best still watch out, though. As someone I love pointed out, I'm more aerodynamic now so that means I'm pretty fast. ;)