Blathering on

 Sometimes I really do forget I have a blog. Other times it's just a busy life season. Once in awhile it's both!

In the month of May, I've had about half a dozen physical therapy appointments and an OT check in on top of wrapping up the school year. Thing Three performed in both a band concert and the Memorial Day parade. I've had two follow up appointments from last year's docs, some dry needling, made a trip to my hometown for a weekend, snuggled babies at church, wrapped up one preschool class with a zoo field trip and an evening spring program, and this week is Thing Three's last week of school while I try to fit in all the online training I need to have done before the end of June. There was also a visit to a retirement home with the preK crowd in addition to my school fighting off yet another wave of germs. Yeesh. No wonder I'm tired!

Arm/shoulder-wise, things are... meh. I'm wearing my compression glove and sleeve daily, I'm doing my PT exercises more often than not, I'm still seeing more swelling than I'd like, but this may just be my new normal. I don't know how we're to know if the vein stayed open since the venogram without imaging, but none has been ordered yet and the follow up appointment isn't until the middle of next month. I'm wearing the reductor kit at night while I sleep, pumping in my cool Darth Vader vest and sleeve* daily and now have a mushroom-shaped pad? pocket? pouch? thing that I wear with the stalk end tucked inside a compression bra and the shroomy end sticking into my armpit. The thinking is that it will help bust up some scar tissue and increase range of motion by loosening all that up. Jury is still out. I've worn it to bed twice. I think I'll try alternating that with the reductor kit since when I do the kit then my hand is swollen in the morning but if I do nothing then this tightness isn't going to be helped even passively... I don't know. I now better understand being over something even while in the midst of going through something!

* Funny story- I was also issued a pair of shorts that attach to the pump because it's easier to order them and get it all at once than to add pieces later. I figured I'd never need the shorts, but whatever. Then I spent an afternoon vigorously yanking out honeysuckle bushes, including one extra hard yank which landed me on my "butt-ducks" as our kids used to say. I'd already been only a foot off the ground because I was using my legs in a squat instead of my back, but I still sat there laughing at myself for a minute. The next day, my butt-ducks and rear thighs were so tight and whiny that I thought, "hey! I can use the shorts!" So for two days that's what I did and, boy, if you've never had your butt-ducks rhythmically squeezed and released, it's really something. I don't know what, but it's something! I can just hear my Grammy and Gramps laughing at me!

I have little news to report on progress made in the basement since the death of the sump pump. We are looking at tile flooring because we know it's only a matter of time before the new sump pump also croaks and we have zero desire to rip out carpet and padding yet again. For the tile we have a first and second choice, we think. We have not taken measurements yet. We also have paint swatches since we were never wild about the color down there in the first place and it's been... well... this fall will be our 12th year here, I think, so we figured we might as well paint before we do the floor.

None of that was on the Bingo card for 2026. In fact, I have paint swatches taped up in the foyer because that's the room I'd painted most recently and it has held up the least well. When I showed Dada my colors, he sniggered and said it was exactly what was already on the walls and that at least I was consistent. I'd be offended except for the fact that he's right; they are almost identical. *sigh*

Thing Two made it home safely from his welding training this semester and has become a bump on a chair at the tall table. His basement bunker is out of the picture, so even though he's still not getting fresh air or sunshine, he's at least visible. Until he turns sideways, anyway, and then he disappears. He's so skinny! Miracles happen every day, and the proof is that my 20 year old Honda, Pepe the Pilot, survived the entire excursion of getting him to and from class daily through winter in Cleveland, involving both extremely rutted back roads and freeways of crazy drivers. Thank you for all the diligent prayers- they worked!

Thing One is working two jobs and having the typical summertime computer issues of something deciding to quit working and never mind that it has 8 years of art on it. Pshaw. Why should it boot up and do its job? This is in addition to whatever maintenance issues the jobs themselves run into. I believe the quote I heard was, "why is it whenever something happens we always have to tear out a wall??" Apparently when someone puts a coffee pot under a leak and then never checks it again... well, let's just say that we have all been introduced to our friend Gravity and that it doesn't bode well. Otherwise, having fun with the housemates and living the dream.

And we still have Boooooosley, who turned 9 on Cinco de Mayo, is no smarter than when we brought him home at 4 months old, and will probably live forever. Loudly. Ridiculous.

I hope all of you experience a GENTLE transition from spring to summer- goodness knows we all have whiplash here from Ohio being wishy-washy at best about what season it thinks it is- and that the end of the school year brings a routine in which you can breathe, and I don't just mean allergy relief. Take good care of you and revive your spirits. 

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...

And so it goes

 I still don't really want to talk about this and it might be because, as a bestie said recently, "I really just hate thinking about all of this stuff and putting in words makes it real."

I so get that.

However, or nevertheless, whether I talk about it or not isn't going to change the fact that I have lymphedema. That's just a scary word that means my lymph system isn't draining super efficiently and so I'm taking on fluid. It's only in my right arm down to midway between my elbow and wrist but that is aggravating because it is DESPITE:

-wearing the compression sleeve this summer, even on vacation.

-staying active

-doing my stretching and physical therapy exercises

-sleeping with it elevated

-still wearing my SECOND compression sleeve daily

Wah. I just want to wallow a bit, but then I remember that hey, my arm still works (mostly) and I can get the mobility back (I hope) and probably if I stop doing what I'm doing it'll get worse so staying busy and fighting through yoga is what I'll do until I'm told otherwise.

I knew but had forgotten that the main lymphedema risk window is up to two years out from surgery and since my lymph node removal surgery was last fall, I'm well within that range. I just had hoped- like I'd hoped the surgeon wouldn't HAVE to take them out in the first place- that lymphedema wouldn't happen to me, but here we are. 

It's not painful per se but it is frustrating that my right arm looks like a sausage and that I can't reach equally far with both arms and that it's exacerbating my right neck/shoulder tightness. I can still do an impressive amount of flexibility, but I can tell how much range of motion I've lost and it makes me furious. 

I don't know if the two months of no lifting/exercising while I recovered from the complete hysterectomy is what set me back or if it is simply that I'm in that two year window or if it's because of the radiation treatment for the second time. I suppose it could be the trifecta of all of that, and perhaps more I'm not thinking of. It stinks that it's my right arm, which is naturally my dominant arm. Of course it would be my "good" arm! Ugh. 

Whatever. I have two arms and two legs that work so I'm going to shut it and move on. If that means I have to go shopping because I can't fit a lot of my sleeves over my swollen arm and compression sleeve, then so be it. If it means I'll need friends and family to right my sleeves and seams when I get where I'm going, then that's what'll happen. If I get my arms stuck in a shirt over my head, well, I guess I'll cry and then laugh and then figure it out. 

Otherwise, and I hate to speak it into the universe but here goes, I'm on my 6th month of my 3 year meds and so far so good. I'm luckily avoiding school germs thus far, so here's hoping that continues! Drink lots of water, wash your hands, and stay warm, my friends!

Fluid fugazi and Fireballs

 My oncologist let me delay my third chemo so that I could fully enjoy Thanksgiving. Enjoy it I did! I delighted in everything tasting the way it should. You know that line from "Into The Woods" about "and there was far too much food..."- well, that was surely us. And a lot of America, I bet!

Last week I went in for pre-travel fluids so I'd be well hydrated and plumped up, I guess, haha. On the drive there, I figured, "everything's still tasting right and I don't have any mouth sores yet... let's try a Fireball!" Imagine my delight when I didn't breathe fire and enjoyed my candy while driving! Wahoooooo!

Upon arrival, the nurse was cheerful and we were discussing Thanksgiving plans with family before she grumbled about my port being a stinker. Apparently sometimes fluids can go IN but drawing blood OUT doesn't work, and since both parts of that are important, she had to call someone from the lab to come stick my arm instead. No big, and apparently I was hydrated enough that she got it on the first try, mercifully (especially as I hadn't been thinking about drinking, assuming they'd access my port)! However, I wasn't super thrilled. The entire point of a port is to save my arm veins- no touchie! Grrr!

An option she gave was to administer a blood thinner and then she would check the port every half hour for up to two hours to see if the blood thinner was doing its job. Or we could skip it and just have the lab do it. I went for the second option as I've never had blood thinners and have no idea what they'd do to me, especially right before heading out of town for the holiday. Not It, thanks.

So if all y'all are still praying, please mention that all involved parties would love for the port to do it's darn job (both parts) from here on out. Thanks!