Monday, October 22, 2018

The continued port saga


*Advisory warning: there are photos within that may cause embarrassment when viewed in the company of others. Or not. Viewer discretion is advised. Sorry, Mom.*

Of course, within twenty minutes of hitting the "Publish" button to blog the other day, I received a phone call. It was my surgeon. He informed me that in his 20 years of practice he's never had to move a port, that patients have previously received radiation just fine wherever the port may lie, and that he doesn't feel it needs to be removed while another is inserted on the other side. He also said he would do the surgery for me if I wanted to do it, but he didn't recommend it. While the odds are small, there is still the risk of potentially puncturing and collapsing a lung. He'd await my decision.

Then the radiation doc called right after that to give his two cents. His concern is that I would forego a "simple surgical procedure" which would lead to potentially more skin damaging issues longer term. Because the skin over the port is raised and thereby closer to the radiation field, the uppermost parts of the skin would receive higher doses (I think?) than the sides. In other words, if my skin was flat as it would be without a port, it would all receive the same amount of radiation. Leaving the port in makes it uneven, but the physics team can tweak whatever it is that they do. Plus, if there is any metal in the port itself, the metal can "scatter" the rays so that it isn't hitting directly where it's suppose to hit. I guess. We're not talking super hero laser beams; still, he wants his treatments to be the best they can be. 

"So you're in a gray area. Can we do it successfully with your port staying on the right side? Yes. Neither of us would ever sacrifice the big picture of treating your disease for something unsafe. We can do it either way. It's your choice."

"Thanks a lot."

We both laughed.

I told him I'd think about it.

I did ask what the odds were of me ending the 33rd treatment  without any skin damage regardless of moving the port. He said they'd be there for me the entire way through treatment to talk about skin care and to be sure to let them know about little things before they turned into big things. 

I also called my oncologist who's been with me since the beginning. She said she didn't see a need for me to have the port moved.

In the end, after polling my nurse friends, badgering poor Dada, relentless texting to other friends, and a phone call with my mother, I decided that if it was truly a big issue, the radiation doc would have said, "you have to have it moved, period." And then that would have happened. Since he said that the team can work around it, I'm opting to go that route to avoid an extra surgical procedure. I suppose time will tell if it was the right choice or not. Who knows if insurance would have even deemed it "medically necessary". 

Lest you think badly of my radiation doc, please understand that he has transferred into my team very recently. The doc I would have had at this juncture has left and I'd never met him. We had met with one of his partners who was wonderful and very thorough and exceedingly kind. My new doc told me that from now on he will be requesting that ports go on the non-cancer side, so this is a big deal to him and I'm confident that he would have brought this up had he been here as part of my team from the get-go.

Tomorrow I go in for the simulation and I can't wait to tell you all about it! 

Today is 4 weeks exactly since my BMX (bilateral mastectomy- not dirt bike) and I've noticed yet another Thing I Should Have Figured Out Had I Really Thought About it: when your arms are spread out (think taking a selfie) or up, your chest spreads as well. When your arms are down at your sides, your chest relaxes. My surgeon had told me my arms would most likely be spread out during surgery, so guess who looks super flat when her arms are out (and yes, I'm sucking the belly in lest anyone get distracted from the matter at hand)? 





And guess who looks concave when her arms are at her sides? 




It isn't bothering me, but it makes me snigger a bit, especially when I flex. To be brutally honest, I don't miss the boobs. Not at all. I am loving being braless, though today is the first day I haven't had either a compression shirt or an ACE bandage on. It's a little chilly, but I don't have nipples to give away the fact that I'm cold. Ha! Sorry, Mom. I'm reveling in the soft T-shirts friends have showered me with and I'm realizing why so many ladies in my online community love their camis up against their skin.

Anyway, I am happy. The areas around the drains are still a little itchy but they're mostly healed. The actual incisions look great.  

Left side

Right side

I certainly never dreamed m'boobs (or lack thereof) would be on the Internet, but there we are. I've been told by more than one person that this blog has been recommended to someone who is on a breast cancer journey themselves and I'm so humbled that God would use my story to hopefully help someone else feel less alone or less afraid. I also hope that they are seeing that life really will go on despite the diagnosis, the chemo brain, the impending radiation burns, the surgical scars, the annoying drains, the less than desirable side effects, and everything else cancer would like to throw at us. Yes, there are tears and tantrums, but overall life is good! I am blessed. To all of you who are along for the ride, thanks for being here and thanks for being you. 

PS The phone just rang. It was the radiation office calling to let me know I need to have a pregnancy test done tomorrow morning before the simulation takes place later. It never ends, hehe. If you can't find me, odds are good I'm in a doctor's office somewhere! 

Have a great week! 




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?