Keeping things interesting

 I used to be boring. Seriously. Before cancer, pre-2018, I'd never even had a cavity or a broken bone.

Now I have a blood clot.

I guess officially it is a DVT though it is in the upper inside of my beleagured right arm, not either leg. Never even thought about getting one there. Saturday morning I awakened to a more-swollen-than-usual hand and an arm that felt like it was someone else's but had been sewn onto my body. When I bent my elbow for a few seconds and then released, the skin went from pinkish-purple (not my usual skin tone) to yellow-white before returning to the shade of rose. 

Of course it was on a Saturday. Of course I'd just seen my oncologist and my PT gal on Thursday. So here's me, playing phone tag with the oncologist on call whom I've never met. He encouraged me to go to the closest ER but that one didn't have ultrasound availablility until Monday, so we rerouted to the hospital attached to where I had chemo, got my vascular ultrasound, and within 15 minutes of being finished was formally informed of the blood clot. However, the tech had already showed me on the screen the spot that didn't squish together under compression of the doppler wand, so I was unsurprised to get the news.

I have been on 2.5 mg of Eliquis as a preventative measure since my venogram on April 20th, with the hope that this wouldn't happen. I didn't really dream that it would be an issue, but here we are.

I discontinued the Eliquis and have been upgraded, lucky me, to twice daily injections of Lovenox for a month. On Saturday, the hospital gave me a dose and a half, I think, to tide me over until my prescription was filled. However, the pharmacy was out of stock and won't have it until today, so yesterday it was back to the hospital for another dose to get me through until I can pick up the meds. Thankfully, the ER doc from further away coordinated with the closer one so I was able to get yesterday's dose without the longer drive. I love it when a plan comes together.

Poor Dada had no idea what he was getting into when he vowed, "in sickness and in health" and probably never dreamed that he would be giving me shots in my belly, the outsides of my thighs, and the back of my left arm since the right is off limits due to the lymphedema. Once again, I am more medically interesting than I want to be!

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!

Wherein I discover that I'm no more organized in 2026 than before...

Here we are, a little over a week into 2026, and you've clearly discerned that one of my New Year's resolutions was NOT daily blogging, haha. I hope you all had terrific, fun-filled, peaceful, enjoyable holidays and have started off the year on the right foot. I have begun a jigsaw puzzle that we received for Christmas, but it is on the poker table in the basement and I'm rarely down there so I keep forgetting to work on it. Need to read more books and assemble more puzzles this year and play fewer games on my phone...

I've also, despite my hope and precautions, ended up with lymphedema, but that it not a story for today. We'll get there eventually. Right now, I'm just... I don't even know. But while I'm thinking about it, for whoever is taking notes, petite medium shirts aren't working. Some mediums also aren't working at all. I very much resemble a preschooler insisting on dressing myself, including getting arms stuck up over my head, because between the compression sleeve and the swelling in my arm sleeves are giving me fits. Please don't shop for me. It's going to be a case of me having to try stuff on to see what works. =/ Gah. Bah. Humbug!
 

On a better note, especially for those of you afraid to break a New Year's resolution, I have boldly gone there already. I possess a ridiculous amount of tea, including fun ones shared between my amazing sisters-in-law, below:

I decided I would have a cup of tea each day in 2026 since I have plenty. 

January 6, I forgot. 

So, you know, not even a week into the resolution. You're welcome. 

So far this is my run down:

Day 1- I admit, I was a little apprehensive to read "green tea, roasted buckwheat, and almond". However, it was delightful! I was not expecting to enjoy it.

Day 2- Grand Jasmin Chun Feng- green tea with jasmine flowers. Here's the thing. Had I not read it, I wouldn't have been consumed with giggles and probably would have liked it more, BUT because my Grammy had a jasmine air freshener in her tiny bathroom that my brother and I loved to hear "pssssst" when we pushed the button, my brain had a problem with the juxtaposition of that scent being in tea I was drinking. I let Dada try it and he thought it was fine, but I noticed he also didn't finish it.

Day 3- Detox- that word kinda scared me so I was apprehensive again but then I read, "rooibos, honeybush, moringa, and mango" and even though I don't know what honeybush or moringa are, I do like rooibos tea. This was no exception. Delicious! Bring on the detox!

Day 4- blend of Assam and Yunnan black teas, which was fine. Nothing stand-out-ish, but good.

Day 5- lemongrass, ginger, and carrot- didn't really expect much from this one but was pleasantly surprised about the delightful lightness of it!

Biggest letdown of the week was Day 6- long jing, "delicate and vegetal green tea". Probably fine if you're a green tea fan. I think vegetal was the right word and this one didn't get finished. I'm trying to drink them all straight and undoctored and this one didn't feel like much would improve it to where it wouldn't taste like honey or whatever versus the green tea taste itself.

Day 7- "blue mountain"- black tea, strawberry and flowers. Yum! Yes, please! Made up for the Day 6 even though I drank both of these on Day 7 to catch back up. 

Should probably mention I'm working my way through an Advent tea calendar that didn't get opened at Advent so I'm kicking off the new year with it before I work my way through all the other stuff I have. I'm also drinking all of these as hot teas, in case anyone wondered.

I don't know what today's will be, so I'll let you know later!

Have a wonderful week!

Annnnd the news we've all been waiting for...

 ...no, I'm not pregnant. Ha! Oh, not that news. Right.

I'll get my port in next week! Once again I get to scrub a dub dub with the sudsy pre-surgical soap, go under anesthesia, wake up for a chest Xray and be sent on my way as a bionic person. I wonder what the ratio of people going into the hospital to get rid of things versus have things added or replaced turns out to be. Hmmm. A port has to be one of the best inventions ever. My left arm is going to be SO relieved to not have to offer up veins for months on end. 

The next day I have a follow up with the plastics doc to see how my incision is healing, as well as a PT appointment for measurements to make sure there's no lymphedema sneaking up on me and perhaps they'll give me exercises to continue building back my arm muscles. Apparently October is another of my go-visit-doctors months! Because THEN...

Chemo starts the last week of this month! Woohoo! 

Now you all think I'm nuts. Who woohoos over chemo starting? Once it's started, it's closer to being finished. I'd rather get as much done while the weather is cooperative. Last time I did it in the summer and while I'm still a bit salty about "losing" a summer, at least I didn't have to worry about icy driving. Oh well. It is what it is. I'm very much hoping to be done with the Adriamycin/Cyclophosphamide cycle before Christmas. So I guess now the prayer becomes that it please not kick my butt and that I stay healthy during the roughest months of the year to stay healthy, haha! I'll just take a page from Harry Potter and sadly resign myself to repeating, "I'll be in my bedroom, making no noise and pretending I don't exist."

Maybe then I'll catch up on my Inktober doodles!