Tuesday, October 22, 2019

What It's Like to Wear a Compression Sleeve

After a diagnosis of lymphedema in mid-June, physical therapy through July, and procrastinating all of August and September, I finally got the stupid sleeve on Saturday, October 13.

I excel at procrastination. I am the freaking queen of procrastination. Just saying.

I got home with the sleeve, opened it up and…yuck. It’s ‘flesh’ colored. It’s gross.

I read the instructions, which are to fold the sleeve over by about a third and use the folded part as a sort of handle to pull it up the arm.

It goes from my wrist to my armpit. Ick.

There’s a sort of latex-but-not-exactly-latex band at the top to keep the sleeve from sliding or rolling down my arm.

So I started pulling the thing on and let’s just say, it’s TIGHT. I mean, duh. Obviously, it’s supposed to be. The pressure is stronger at my wrist and lets up a bit as it goes up my arm. To be precise, there is 30mm of pressure at the wrist and at the top of my arm the pressure is 20mm. Whatever the hell that means.

Basically, it’s tighter lower on the limb in an effort to keep the lymphatic fluid from pooling there. The looser parts at the top allow the fluid to travel back up and into the body where it can be stored/flushed.

I mean…I guess that’s what happens. What do I know? I do know that during the massages my PT (you remember Kim) performed on me, it was all about moving everything back up and into the center or even off to the right side of my body, where all my original lymph nodes still exist and do their job (I assume they’re doing their job.)

So I tugged the sleeve onto my arm with Tom and Alyssa looking on with fascination.

Yes, it was lovely to have an audience.

When I got the garment (that’s what they call them on the website I found) up near the top of my arm, Tom took over tugging at it.

That was great fun, let me tell you.

I think my disgust with my arms is well documented. I haven’t worn a tank top since 1994 because I find my upper arms to be hideous. Sure, I wear a swimsuit to the pool/lake but that’s because wearing a T-shirt would gain more attention than just donning that ugly suit and going with it.

I hate that Tom has to be up close and personal with one of my least favorite body parts.

I even went so far as to apologize to him for having to touch my gross arm.

To his credit, he told me to shut up. He’s a keeper, that guy.

Once the sleeve was on I evaluated how it felt.

It was tight but not uncomfortable. But my arm did feel tired just from having the sleeve on. My elbow felt especially fatigued. Weird.

It also felt cool, as if the sleeve was keeping any heat from accumulating on my skin or even in my arm. My mom said something about it being good for winter since it should keep me warm but honestly, I don’t think that’s how it works; at least not for me.

I wore the sleeve for about six hours that first day. It was a relief to take it off.

The next day, I wore it for 8ish hours.

The third day, I wore it to work and made it maybe five hours before I couldn’t stand the way it felt on my elbow. See, the thing creases weirdly in the fold of my elbow and makes it itch and hurt.

PT Kim told me to start slowly and work up to wearing it during all my waking hours. We’re going slowly, that’s for sure.

The fourth day, I made it the entire day at work, so there’s that.

I still don’t have the gauntlet (the part that goes on my hand.) The dude at the medical supply store who sold me the sleeve told me to watch my hand closely and if I noticed any swelling at all to stop wearing the sleeve until I got the gauntlet.

So far, my hand is fine. I really ought to get on ordering that thing, though. Hopefully before February, since that seems to be my current timetable with this sort of thing.

It’s just one more way that cancer has affected my life; one more way that cancer sucks.

Monday, October 21, 2019

The Journey to a Compression Sleeve

Back in June my radiation oncologist diagnosed me with lymphedema of the left arm.

Yes, the fact that I have a radiation oncologist kind of freaks me out. Let’s move on.

His nurse measured my arms (as she does at every visit) and found that my left arm was 3cm bigger than my right arm. In Lefty’s defense, I am left-handed, which means there’s probably more muscle over there as compared to Righty, which is just the support arm.

But whatever. I walked away with the diagnosis of lymphedema.

I was given orders to see a physical therapist.

After several phone calls and a bit of a tantrum I finally got scheduled for some appointments in July to see Kim, a lovely physical therapist who specializes in lymphedema. Apparently it’s a highly specialized field and not many PTs care to learn it.

After four sessions with Kim (my insurance would only approved four sessions, yay American healthcare!) I left with an order for a compression sleeve and gauntlet for my left arm/hand.

I went home and put that order…somewhere.

I did the exercises assigned to me by Kim and I half-assed the self-massage that Kim taught me.

Kim had mentioned that when I went to get the compression sleeve/gauntlet, I’d need to go to a medical supply store.

Guess which town does not have a medical supply store? That’s right, Angola, Indiana does not have a medical supply store. Big surprise.

Damn it.

There are a couple of medical supply stores in Coldwater, Michigan, though. There’s also one in the hospital in Auburn, Indiana.

And of course, let’s not forget Fort Wayne, which obviously would have medical supply stores on every freaking corner. Fort Wayne has about a bazillion hospitals, OF COURSE they’d also have a plethora of medical supply stores.

About a month after my last visit with Kim, after googling medical supply stores and not being able to figure out which ones would actually have compression sleeves (I mean, really, stores with names like Hudson Aquatic? Please.) I went back to the rehab department where I’d gone for physical therapy and asked if they had a list of stores where I could get a stupid sleeve.

Okay. So yes, I waited awhile. Give me a break. My stupid arm does not look swollen. I was doing the exercises daily. My daily life was not being affected by the mild lymphedema in my arm.

But…I am going on a bus trip in March and Kim told me from the start that when I traveled, especially by plane but also by car or, yes, bus, I should most definitely wear a sleeve to keep swelling to a minimum.

So fine, I’d get a sleeve.

The hospital rehab facility had a list right there at the front desk. Why Kim hadn’t given me that at my last session, I have no idea.

I took the list and waited another week or three and finally started calling around. I hate making phone calls.

I found that one of the stores in Coldwater could measure my arm and order a sleeve for me if I had a prescription.

Huh. I wonder where I’d put that order from the PT/doctor.

Okay, then.

I half-hearted looked through the several piles of paper we have laying around our house and then decided that if I had to, I could call Kim and ask for a new order.

But before I did that, I gave myself one more evening to find the paper. Guess what? I found it! It was right where I’d left it on top of the entertainment center in the living room. It was under the red and yellow bands Kim had given me for my resistance exercises.

So I worked extra hours all week long so I could leave at 4 on a Friday to go to Coldwater (about a half hour from Angola) and get that damned sleeve ordered. Because, see, these stores were all only open until 5 and only one of them had Saturday (9am to Noon) hours, and that one was in, you guessed it, Fort freaking Wayne.

I googled the address and it was right there off interstate 69. Yay!

I left work, drove to Coldwater, drove to the storefront…and it was empty.

I drove around the building thinking maybe they’d move next door?

No.

I parked my car and called the number I’d called earlier in the week. I asked the woman who answered if they’d moved.

She said, “No, we’re still in Hillsdale.”

Hillsdale!?! What the actual hell? I said, “Uh, the address I was given is in Coldwater.”

“Oh,” she said cheerfully. “We haven’t been in Coldwater for about three years.”

Well. I thanked her and hung up. What else could I do?

I then Googled and then called the place in Fort Wayne that has Saturday hours to make sure they even sell that damned sleeves because, yeah, I’m NOT driving all the way to freaking Fort Wayne if they don’t.

The dude who answered said that they do sell them, they have them in stock unless the patient needs an extreme size (am I extraordinarily sized? Who even knows these days?) and hey, they’re open on Saturday.

So the next morning, I got up at 7:30 (on a Saturday! L) and drove to the SOUTH side of Fort Wayne (because why would they have a medical supply store on the north side, where there are TWO hospitals?) and bought my sleeve.

Hey, guess what? My arm is not extraordinarily sized. It’s just large. Like, for real, the size sleeve I got was ‘large/regular’. Hey, go you, large/regular Lefty.

They did not sell the gauntlets at this store so I need to order one online.

One last thing…as I was paying for my $90 compression sleeve, I said something about driving from the Angola area. The dude looked at me and said, “You came from Angola?”

I nodded, taking my HAS card back.

“We have a store on Coldwater Road,” he said.

Huh? Why the hell didn’t Google tell me that? That would have saved me about 20 minutes on my drive.

But whatever. At that point. I was just glad to have the stupid sleeve. But wait. Now that I have it, that means I should wear it, right?

Friday, October 18, 2019

Scribbles

Olivia’s tendency to scribble on her school work is known far and wide. When she’s bored or doesn’t understand what’s expected of her, she’ll spend her time doodling on the paper she’s supposed to be working on.

Math is one of those things she’s most likely to scribble all over. She hates math.

I get it.

But I’m also frustrated by her scribbling because it means she brings home notes to which Tom wants me to reply.

Why that man can’t just sit down and write a reply himself is beyond me. Oh yeah, that’s right, teachers only want to hear from the parent called Mom.

Whatever.

Recently, O brought home one such note.

When I got home, she raced to greet me, starting in one some Miraculous Lady Bug story or something like that.

I read the note and Tom called from where he was reclining on the couch with his foot propped up (can you hear the eye-rolling that’s going on over here?) that I needed to reply to the scribble note that Olivia was losing screen time due to her scribbling at school.

Guess when her screen time ban was starting?

After dinner, that’s when.

She’d been on her table from 3:15 until I got home at 5:00 but once dinner was over, NO MORE TABLET.

Can you guess why that was the case?

I’ll give you a minute.

That’s right. The timeframe for lost tablet time was set so that I would be home during her time away from the tablet.

That way, I would have to deal with her all evening, finding things for her to do.

“Go read a book.”

“Get the colored (collared?) pencils and draw something.”

“Get out of my face and find some Barbies to play with!”

Those were just a few of the things I said to her during the three hours during which she was not allowed to be on her tablet.

Did she bother her dad?

Not much because a much more fun target was home.

I do know that we have to set parameters for her. I know that we have to find ways to make the scribbling stop but damn it, why can’t at least SOME of that time happen when I’m not there to have to actively parent?

Thursday, October 17, 2019

Amazon Can Bite Me

A recent Monday afternoon I got home from work and was asked by Tom, “What music did you buy on Saturday?”

I didn’t buy music on Saturday.

He informed me that someone had purchased some music on Saturday and used his debit card to do it.

Huh. Weird. I texted Alyssa and asked her if she’d bought music from Amazon on Saturday.

She did not.

We went to my Amazon account and there was no record of music having been purchased on Saturday.

Tom went to his paypal account and there it was, a pending charge of $10.47 for Amazon music.

I suggested his card had been hacked.

But no. It hadn’t.

He did a little more digging and found ANOTHER charge to his card for an ‘unlimited Kindle’ account.

Olivia had gotten a Kindle the previous Christmas but hadn’t used it in at least five months because she dropped the damned thing.

As we all know, Kindle is an Amazon device.

Apparently, when you register a Kindle, you are automatically signed up for an unlimited account. You aren’t asked if you want this account, you are just signed up and you are then charged monthly for this service you don’t even know you have. Tom started getting charged in July for this because that’s when we almost bought a brace for his broken clavicle but we’d cancelled the purchase. Sadly for him, we didn’t delete his card from my Amazon account and Amazon made his card the default payment card.

This is lucky for me, though because I’d probably been paying that stupid Kindle charge since December and would have probably paid is FOR FREAKING EVER if Tom hadn’t caught it.

Cancelling that charge was not hard but it wasn’t easy either. It wasn’t just right there, asking you if you wanted it. I had to go into my account settings, my devices, my services and finally found it and was able to cancel it.

But wait, Amazon said. Are you SURE you want to cancel this service?

I’m sure as shit I want to cancel a service for a device that doesn’t even work anymore, you assholes!

Then, we found that we were paying another $40 for some kind of Amazon music service.

We cancelled that fucker too.

I have no idea how or when my account got signed up for that service either. But I’m pissed that Amazon can get away with this kind of thing.

We went ahead and cancelled all the cards associated with my Amazon account. From this point, I’ll just do what I do for Netflix and Hulu and buy gift cards if I want to purchase something off Amazon. Which honestly right now I don’t really want to give Amazon any more of my money.

Amazon can go screw itself.

Wednesday, October 16, 2019

Forgiveness

I forgive myself for some of the stupid shit I did in my late teens and early twenties.

I forgive myself for making bad choices that, at the time, seemed like the only choice.

I forgive myself for being harder on myself than I am on anyone else.

I’m letting go of grudges I’ve held for decades.

They hurt no one but me.

I forgive myself, though, for holding those grudges.

I am going to stop hating myself for every little thing. The fact that the bananas I bought last week were a little green? Not a big enough deal to beat myself up over.

I didn’t vacuum yesterday? I’m not letting it weigh on me.

Was my family fed? Was the laundry done? Did they all have clean sheets to sleep on and clean towels to use after their warm baths/showers. Did they go to sleep knowing they are loved?

Yes to all of the above. And because of those yeses, I know I’m a good wife and mother.

I’m a good daughter and sister. I’m a good niece and cousin. I’m a good aunt. I could be a better friend but I forgive myself for that too because I’ve got a lot on my plate and my real friends do too. We understand that somethings have to slip in order for us to do the most important things.

I forgive myself for getting cancer. It wasn’t my fault.

Even though it might have been caused by my fatness, it still wasn’t my fault. Thin, athlete women get cancer too. And we all fight it the same way, with all we’ve got.

I forgive myself for saying I was an idiot the other day but I’m also going to try and stop doing that. I wouldn’t say that to a friend, why do I say it to myself?

Let’s all try this. Let’s be kinder, more loving to ourselves. Let’s be more forgiving. Let’s live our best lives, knowing we’re doing the best we can to be there for our loved ones.

We’re all important. We all matter. Words can hurt. Let’s start using kinder words, even about ourselves.

Tuesday, October 15, 2019

Banana Ooooh Nana

I hate bananas. Given my propensity to over-share, this probably is a well-established fact. I distinctly remember liking bananas as a child and then, around four years old or so, I must have gotten a bad one because from that point forward, no. No freaking way. I hate the taste, the smell, the texture. I hate the little black things (seeds?) in the middle of the penile shaped fruit. It’s just SO GROSS.

While visiting my aunt in the hospital one recent weekend, several cousins, aunts and uncles were there. (Quite honestly, we weren’t sure Auntie Nell would make it through that night. She rallied and is doing better.)

My cousin E had two bananas in her purse.

Gag.

She offered one to me.

I made a face and she laughed.

Her dad was next to her and nodded his agreement to the face I made. He said, “You don’t like them either?”

I made a gagging sound and said, “No, they’re disgusting.”

J agreed, “I don’t like them but I make myself eat two a day.”

I gave him a blank stare.

He stared back.

When I could finally speak again I asked, “Why? Why would you do that to yourself?”

“They’re so good for you. I want the potassium,” replied Uncle J.

“Duuuuude,” I exclaimed, “they sell supplements for that sort of thing!”

“But getting it from food is better for you.”

I shook my head, “Sure, except then you have to actually eat the nasty things. Nope, not going to happen.”

“What about banana bread?” Cousin E asked as she munched on one of the bananas she’d pulled from her purse.

“No.” I replied with an even tone. “Not banana bread, not banana muffins, never banana candy. Banana pudding is even grosser than actual bananas. Nothing banana, not ever, no way, no how.”

“I love banana pancakes,” piped up another cousin.

I spun to confront her, “Are you crazy?”

At that point, we had quite an audience.

And see, here’s the thing. I get that other people actually enjoy eating bananas. That’s fine. Go you if you like bananas.

But why, in this day and age, would anyone subject themselves to something they don’t like just for the nourishment? I mean, it’s not like Uncle J is at risk for malnutrition. Being able to abstain from repulsive foods is one of the (many) benefits of living in a first world country.

And just so everyone out there who loves bananas knows, I buy bananas every single week for my two banana-eaters, Tom and Liv. They love those gross things and since I love Tom and Liv, I buy them fresh fruit. I’m a freaking superhero over here.

Monday, October 14, 2019

Nerding Out

I tend to fold laundry in my bedroom with the television on. These days I’m working my way through Star Trek Voyager. I’m currently on season 3.

*screech* I realize that I could stop this post right here and it would be enough to indicate the extent of my nerdiness.

Alas, there is more.

One such afternoon, Alyssa happened to be in my room with me during the above adventures. There was some joke on the show and I actually laughed out loud. No sksksksk for me. No, this was full on laughter.

Alyssa looked at me like I was crazy.

I asked her, “Is my nerd showing a little?”

She muttered, “A little?”

Huh.