What I'm up to, and what's next

 If I tell you this, you have to trust that I'm not crowing about it or trying to make anybody look bad, and you must understand I'm not putting myself above others who choose not to do this:

I am scrubbing the outsides of my kitchen cabinets today.

In my defense:

1.) It's my spring break. My Mommeeee is visiting and since she gets wiped out from travel, it's a good day to stay home and chat with her.

2.) I wasn't here last spring to do it as I was in the big city being radiated and didn't want to use my already-short weekends at home to do them then. Then time for fall cleaning rolled around but I started working at school  instead. Yes, it is an "or" situation, not an "and", hahaha. Anybody who has ever been to my house is now nodding in understanding.

3.) It is a really good set of stretches for this afflicted right arm and side. More on that later.*

I may never, ever get to my baseboards (looking at you, my bestie) but I can do these kitchen cabinets. I'm about halfway done. I'll be the only one who even notices that they've been cleaned, but I can tell you that I burned 100 calories in under half an hour, so if you're sick of the treadmill because it is STILL too cold out, well, grab your bucket and a rag, turn up some music, and off you go!

*************

Whoops. That key really stuck. Oh well. 

The scoop on my arm and all that jazz is this: in two weeks I'll have a procedure called a venogram in which contrast will be run through an IV and then watched with an ultrasound to see how compressed my vein is in that right upper arm/ shoulder/ armpit/ axilla quadrant. If it is open at all, the surgeon intends to inflate a balloon in there to "snowplow" it open the rest of the way and then will withdraw the balloon, similar to some heart procedures. I will be awake but under some sedation as they may want me to move that arm in various positions so they can see where bloodflow is being compressed, etc. I will be on blood thinners for 3 months following all that, which I confess to being less than thrilled about, but I understand that is to give the vein practice with easier bloodflow as it recovers. (My main concern is that one of my meds dries out my eyes and nose already and I don't want constant nosebleeds.)

If the vein is completely closed, then the surgeon will have a discussion with my plastics guy to develop a plan to take more drastic measures. Even if the procedure works this time, there's no guarantee the vein will stay open because it's been radiated twice, so we may end up with the second plan anyway. We only got the bare bones of that plan floated, but phrases like, "yes, something from a cadaver could work", "I'm thinking your veins in your legs would be too small", and "we sometimes use the jugular vein but that would be from your left side" were bandied about. 

In the meantime, I'll be starting PT for my shoulder range of motion and having more dry needling done, which I've done twice now and am amazed that it works. I am flummoxed that someone can stick half a dozen needles into me no problem and I feel better but every opportunity for a blood draw is fraught with stress. So weird. 😁

Anyhoo, back to the second half of my cabinets!

Lo, I shall call you The Reductor

 

I had a CT scan yesterday which went pretty well as far as I could tell, and then I had a PT appt after that. My physical therapist moaned in dismay when I updated her on all the lymphedema happenings because she'd last seen me in November and the swelling hadn't really picked up yet then. 

So we got to work. I got a Reduction Kit. Its job, while it's worn 23 of 24 hours a day, is to more seriously squeeze my arm to help the fluid get where it needs to go. The compression sleeve I'd been wearing was more of a maintenance sleeve and we've gone past maintaining and into the realm of "let's reverse this process."

I now have in my possession two soft fabric sleeves with thumb holes. I slide into one of them and then add this velcro contraption over top. It has 8 separate sections to pull snugly over the 2 bands inside. She asked, "where can I number them so that they're unobtrusive?"

"Oh no. I work in a preschool. Number those suckers right on there and we will practice counting!"

I've only slept in it for one night at this point and I have to say that I got tangled in the covers a little bit less than I expected. Wardrobe might be a bit tricky for the month that I'm to wear it. Today I wore a tank top with a loose, drapey, poncho type sweater over it. Blouses are not going to work right now as they were already tight over the compression sleeve and this is substantially more bulky. 

I was resigned to wearing it forever, so I asked, "won't my skin get pretty wimpy if it never sees the sun and doesn't get out in the fresh air?" She was horrified and corrected me immediately, "oh! I'm SO sorry. This is only a 2-4 week thing, not a forever thing! We just need to reduce the fluid and get that skin soft again. This isn't the rest of your life!"

Whew.

Thankfully, it's still going to be wintry for awhile in Ohio, despite the 65 degrees it hit yesterday, so I'll be able to get away with tank tops and sweaters, I think. 

Today, the plastic surgery team meets to go over my CT results and my measurements and all that jazz to see where my lymph system or circulatory system is having trouble.  They had contrast in that IV yesterday and will hopefully be able to see "where the dam is spilling" or where things are compressed to the point they're draining ineffectively. I sure hope it showed something! Then they hope to come up with a plan for how to help me, including surgery if needed. They talked about how they'd most likely need to transfer skin from my back to the area that's been radiated twice so they have healthy tissue to work with as they clean up whatever is happening in there. I am not even going to try to speculate what that all involves, but I do know that removing lymph nodes from my belly (where they don't really do much) into my right arm is a possibility. Beyond that, I decided I'll just wait and see because someone on that panel may say, "hey, I read about XYZ so maybe you could try that with her!" No sense in getting stressed about it before any of it has to happen. 

Meanwhile, none of my three year olds today asked about my new sleeve, though I am sure the majority of my fours and fives tomorrow will give me the third degree! I plan to draw bugs which correspond to the numbers on the velcro panels- 9 fruit flies, 8 ants, etc. down to one large bug like a praying mantis or something. If I'm going to be in this thing, might as well make it fun. Good thing our Resident Artist is home to help as well!

As far as prayer requests go, I don't even know other than A) a good plan that bodes well for ideally no/few issues in the long term and B) that can be done between school and vacation, again ideally, and C) that everything is healed before our Christmas in July party so that I can be living life! Just DON'T pray for patience for me as I figure out how to finagle all of this stuff with my left hand because I'm right hand dominant, of course!  

Don't take your elbows for granted. It's all fun and games until you can't bend your arm...

MRI recap

 Yesterday morning while admiring the smiling moon, I drove myself the three minutes to the hospital for my MRI. Shh, don't tell, hehe. Upon arrival, the friendly registration ladies said I was all set and sent me down the hall. I was the first one in the waiting room, haha!

After attaching my snazzy hospital bracelet and filling out the paperwork on a clipboard, I sat down to wait out the few minutes until I was to be summoned.

My radiation tech had kind, smiley eyes above her mask as she told me apologetically that I'd have to change, showed me the locker of scrubs and the changing room, and waited for me. She then escorted me to the MRI room where she and her fellow tech explained that I'd be in the machine about 20 minutes and then they'd inject a contrast into a vein and then I'd have about 5 more minutes. 

So I hop up on the table/tray/slab and wiggle into position. She asks if I'd like a blanket as it'll take about half an hour for everything, so I said sure. They tuck me in, hand me the call button, caution me that it'll be loud in there, and ask what kind of music I want. Adding a pair of the puffy, over-the-head headphones and clipping a plastic hockey-looking mask over my head, she tells me I'm all set. I giggle about it really feeling like Halloween as now I look like Jason from the Friday the 13th movies. 

I close my eyes, because I figure I won't be able tell how close or tight the top part of the machine will be to my face if I can't see it. Yes, the air current might feel a little different depending on if I am in or out, but I can do this. 

And in I go! At first there's some blips and boops and rata-rata-ratas as the machine sets itself up. Sometimes it feels like you're on top of a car hood that's been out in the sun awhile. Sometimes it feels exactly like sitting in my tenth grade Spanish class with a certain soccer player sitting directly behind me who repeatedly kicked my chair enough times that I wanted to elbow him in the face, that constant small jamming jiggle that you feel through your whole body. Sometimes it sounds like being inside an old printer, that bzzzzzzt bzzzzzzt bzzzzzzt sound. Sometimes it's like a mosquito the size of a T-Rex hovering over your shoulder. 

I picked smooth jazz so that I wouldn't be tempted to dance or sing along to the music because I was supposed to be still for accuracy purposes. The first few minutes there was no music and I thought, "hmm, either they forgot to turn it on or their headphones aren't working. Oh well. I'll just pray." So I started to pray for a sweet friend of mine and there was a large thump that made me jump a little and then the music started. I was glad, as it was hard to concentrate on praying with all the racket and no music to focus on. 

I listen to a handful of songs and then they pull me out to do the contrast part. Uh oh. Well, I'm already laying down, so I theoretically shouldn't pass out. She ties off my arm, has me make a fist, pops that sucker in there first try, reminds me that I might feel coolness versus the warmth that CT contrast has where it can make you feel like you peed your pants, and is done in no time. Then she says, "five more minutes, you're doing great." 

I close my eyes again, they stick me back in, and right when I think I might be done, it gets really bright. I think, "oh, maybe I'm out." So I crack open one eye and nope, still very much inside a tube made of what reminded me of the white walls of the Millennium Falcon. Reshutting my eye right quick.

Very soon after, she calls through the intercom that I'm done and that they'll help me finish up in just a few minutes. I have a few last minutes of music and then she helps me off the table/tray/slab with a, "you did great!" I thank her for doing great with the needle, haha. She tells me that they'd most likely have the results by tomorrow (today). I figure I'd give it another day and then call my doc for results if I didn't hear from the office first.

I put my clothes back on and head on my merry way, back out through a much fuller waiting room.

Imagine my delighted surprise when I got a call yesterday saying that the MRI results were fine/clear/normal! Woohoo!

So thanks for praying, everybody. I maintain that I am a single stick patient and that the whole brouhaha was brought about by my bod's overreaction to multiple and/or moving around needle jabs. Thank you all for the texts checking on me and for being available to help in your myriad of ways. I appreciate all of you!

Happy hump day!

Still grounded

 Tomorrow morning (at the buttcrack of dawn, might I add) is my MRI. For those of you scratching your heads, my bad. "Let me sum up," as Inigo Montoya says. I need to back up a bit.

*beep beep beep beep*

Last Monday I had the EEG and was to have the neurology appointment directly afterwards. However, the neurologist had a family emergency so my appointment got punted to Tuesday afternoon.

After he listened to my story of why I was there, as if he didn't already know, he told me that the EEG looked normal. Yay! I have a brain! Shush, Hinrew. Then he said something a little discomfiting; "however, small things can hide in an EEG so I want you to have an MRI. If things look fine from there, I'll check on you in four months. My gut feeling is that we do not need to put you on anti seizure medicine as that would be life long and has serious side effects."

Um, yikes?

My husband, the engineer, growled afterwards, "if the MRI is the definitive test, why did they order an EEG instead of an MRI?" Good question. Nurse Lisa told me over the phone, and I could hear the groan and the roll of her eyes as she explained, that insurance companies most likely won't cover an MRI unless an EEG is done first, even though it's dumb because if they just did the MRI they'd have the results they were looking for instead of now paying for two tests. Which is pretty much what my mother had texted me as well.

So, tomorrow morning I am signed up for an MRI with and without contrast. I know I've had one of these before, but it's kind of a blur. The tech asked over the phone if I was claustrophobic so I'm going with they're sticking me in some kind of tube. Good news is I'm allowed to eat and drink normally beforehand, no fasting, yay. Undecided news is the "with contrast" part... I can't remember if I only have to drink that or if that's through an IV or both. Less yay. Not gonna get fussed about it, though. Not worth it.

I also will need to ask if the results get read by the neurologist and if his office will let me know what it said or if I need to call them, or what. I was told not to drive until the results of the EEG were in, and I was a good girl and didn't, though I've discovered as a 44-year-old woman what it feels like to be grounded. Not a fan! Very inconvenient, even during a pandemic when events and activity levels are much decreased. Grr. Then he ordered the MRI and said to not drive for another week, maybe two to three weeks, something about six months at which point my non existent eyebrows shot right off of my head. I hope he was kidding, cuz man, that ain't happening. I am going with a week as that's what he said first. So there. 

Tuesday I also saw my oncologist who went over all my numbers and pronounced everything perfect. So good, in fact, that she doesn't need to see me for six months, so I won't have to head down there at all this winter, wahoo! She also felt I was good to drive and that the troublesome fainting episode was simply a reaction to the blood draw.  She went so far as to make a note in my chart that I will be reclining for future blood draws. Nurse Lisa approves, as per her "for the love of all that is holy... would you please make sure they lay you down for blood draws!!!" Favorite doctor ever. Teehee.

So as you roll over and hit the alarm for the day or as you roll over and go back to sleep tomorrow around 6:45, send a prayer or a good thought that the MRI finds nothing more than a small sign etched onto my brain reading, "STOP JABBING MY HOST!" Thanks a bunch! Have a great week!