Last one, best one. *Skip if you're not into skin photos*

*Viewer discretion is advised. Material may not be suitable for sensitive viewers.*

I'm stickerless! WooHOOO! And I got to sleep in my own bed last night, but that is another post entirely. The TL;DR verson is that proton radiation did not take place here in our town, so Dada and I have been leaving on Monday mornings and returning Friday evenings for the past 6 weeks. 

But yesterday was "last one, best one" and now I'm done!

Lighting always being interesting, here are shots of my skin and what 28 sessions of proton radiation looks like. Yes, my armpit is almost black inside and sloughing off dark pieces of skin, which is as disgusting as it sounds, haha.

Already missing plenty of stickers but the team claimed they had what was necessary:

And now sticker free! Now if I could just get rid of the compression sleeve... Alas. I'm being good and wearing it every day and removing it at night like I'm supposed to. 

 There will be a lengthy post next week about all the Shenanigans we got up to whilst we were out of town. I promise that will be a much more fun post, but feel free to toss a handful of confetti on my behalf somewhere you don't have to clean! Woohooo! All done with rads! Thanks for all the prayers, texts, snacks, support and love!

Last one, best one, again.

 Someone finished freshman year!

No, that's not him. But the bus driver and other passerby sure got a kick out of it!

There's the gang, hanging out in the 50+ degree weather on the last weekday of May. 

Happy last day(s), first day(s) of summer vacation, last few week(s) depending on where you are in all of that.   

We are trading in the insanity of a school year for the utter nuttiness of summertime. Won't you join us?

Radiation round up- almost done!

*Some reader discretion advised. Not all images may be suitable for all audiences*

But this one is:

Before I get into any of the cancer stuff, Dada and I got to go see Thunderbolts* in an IMAX theater with less than 10 other people. Seriously. Fun times! It's a good one to see BIG! And, holy cow, loud. He's such a cute date. 😍

Above and below were the same day, May 14. For context, I think I started April 21 and have had radiation every week day since, except today for the holiday. 

The red arrow shows the top half of my scar from last fall when the tumor was removed and the lymph nodes were extracted and lymph vessels were rerouted into veins. The yellow arrow points to my mastectomy scar, the blue one points to a surgical drain scar, the purple arrow highlights not a scar but the indentation of where my compression sleeve is digging in, and the green line shows where the radiation field stops along my side. 

And further down we have love handles which don't need any more attention drawn to them. Moving on! 

I took the photo below this Tuesday and have had 3 sessions since then. Only three more to go and then I'm done! If you search Lady of the Lotions in this blog,  December of 2018 will get you there eventually, you'll see a photo of what I looked like from the previous round of radiation. I was peeling in circles and the burn was more intense. Granted, I still have three to go, but I feel that between the proactive recommendation (and use) of steroid cream and the more precise nature of the proton therapy, my skin has held up better overall.

Side effects of radiation are fatigue- I guess you get tuckered out from your cells ferrying out all the other dead and damaged cells but I continue to forget that and wonder why I'm exhausted after yard work- and I'm finally experiencing some itching, like a sunburn can when it's not really complaining but kind of reminding you that it's there. I'm a bit tight as well, but I haven't done yoga for the last 4 days as I've been weeding and doing more housework related movements instead. 

What is surprising (but perhaps isn't really when one considers it) is the side effect of a sore throat. You know how when you have a sore throat it feels swollen and also scratchy or scrapey or sting-ish? Just keep the swollen. It's caused in this case by inflammation from the radiation, but it doesn't sting or feel scratchy. It does make swallowing less instintive and more intentional. 

Thankfully, my doc is on the ball and had given me the heads up weeks ago about that possibility and has asked every week if I'm experiencing it. It didn't really start until last week and even then it was less with swallowing and more ... burps felt like they were thicker. I've noticed that when drinking, instead of just chugging water, I have to slow down and sometimes stop for a reset. I don't want to drown! The doc asked if I was still doing pills okay and I thought about it before saying, "well, the calcium pills are a little scary but they regularly try to kill me so....." 

So the simple solution is MILKSHAKES, muahahaaha!

All in all, doc thinks I'm doing fantastic. I have these last 3 to go and then hellooooooo summertime! This therapy will coincide nicely with the end of the school year. 

Thanks for all your prayers- you can see how well they've worked- and be safe this Memorial Day weekend and wrapping up the school year!

 

That decking hole

Apparently I don't have a photo of the actual hole, but out of the frame to Dada's right there was a soft spot caused by water and ice collecting under a large ceramic pot. I stepped onto said soft spot and turned it into a hole. No, I wasn't hurt, but we had a gaping crater in the deck.

Dada and Hope Depot and a long weekend to the rescue!

He and Thing Two did a nice job, and Thing Three also helped with some replacement slats along the side down to the yard. There's more to be done, but isn't there always?

 

Smoking in the rain

The other day whilst at rads, we get a call from Thing One, who sends video of an outdoor outlet smoking in the rain. Yes, you read that correctly. 

"Um, that's not supposed to be smoking, right?"

Good thing a certain someone was heading out to pick up pizza or else we'd never have known. It was an outlet we use rarely for outdoor Christmas lights around trees in the front yard. It's almost always off but our furnace guy had come for a tune up and we think he probably flipped it on accident. There was so much impacted debris from insects and/or critters that something lit or sparked or who knows what. 

A friend of ours kindly dropped what he was doing to check it out for us and deemed it not a safety threat as everything was once again off. Sadly, it looks like more than just the outlet itself will need to be replaced and that's a job for another day. 

So there's your PSA for today: be sure to check your outdoor outlets for Shenanigans!

 

Lingering effects

One of the side effects of chemo can be finger- and toenail weirdness. They don't call it that. I'm sure it's "changes to nails" or some such, but weirdness it is. Hasn't been terrible for me, and was confined to my big left toe, but as I always have my nails painted it doesn't much matter. I keep my fingernails painted to keep them out of my mouth, otherwise I'm nibbling at hangnails, and since that was especially frowned upon during the pandemic, I figured if I paint them I'm less likely to succumb to temptation. Now, I do NOT nibble my toenails, but painting them gives me something fun to look at, so they're almost always done!

You can see how much more it has to grow out to be back to normal. Cancer, and chemo, the gifts that keep on giving...

Problem solved! Wandering rose to the rescue!

 

Rads rundown

This radiation is a little different from what I had in 2018. That was photon radiation and it’s essentially an Xray through and through. The same rectangle of skin got the same dose all 33 days, with weekends off. 

This time it’s proton radiation which is more targeted. Supposedly, it spares extra damage to the surrounding area because it expends its energy more immediately and then drops off, which can save your skin some of the intensity, from what I understand anyway. 

As with anything, there are potential downsides including damage to my brachial nerve which runs clear down to your hand. I haven’t noticed anything like that (yet) but I am getting pinched by my compression gauntlet which makes my hand ache a little bit. Of course it’s my dominant side! That’s just life.

The proton gantry machine itself is so impressive. It’s made up of interlocking panels which rotate around from ceiling through floor to get 360 degree imaging. Sometimes it sounds like being within a roller coaster structure with a racetrack nearby including engines revving and then slowing back down. 

I change into a “gown” and for the life of me I don’t know why they’re gowns instead of robes, hop onto a sheet-covered metal table that the team can tilt and slide as needed, and wiggle my lower back down against the table top. I slide both arms out of my gown and they lower it to  my waist so the machine can match up all the stickers on my torso with whatever parameters it needs to meet. My knees are elevated in one of those triangle supports that have slots for your legs like two open hot dog buns side by side. They made a mold for my upper body that fits me specifically in which I raise both arms over my head to grasp onto removable pegs up behind my head to keep my arms in place. Then they have me raise my chin to keep it out of the area being irradiated and gently run some tape from one peg, under my chin, back up to the other peg like a big U, just to remind me to not lower my chin down. Then the team makes sure I’m lined up where I need to be and they step out to do the 360 images and then if those look good, the actual proton therapy begins.

It sounds like sonar or something out of a sci-fi movie with the pings that increase in speed. By the end, it sounds like someone sucking the dregs of a milkshake through an astronaut helmet. There are also the bangs and clanks and vrooooms as the panels rotate around, descend closer, recede and fit back into the wall or ceiling or whatever it’s even called. Yesterday there was an exceptionally loud CLUNK and one of the team laughed and said, “THAT was louder than usual but everything is fine!” Through my taped jaw and not-quite-clenched teeth I responded, “thanks!” 

It takes about 15 minutes from the time I am ready to hop onto the table to the time I am re-dressed. The team and the supervising doc are people I can’t say enough good things about. They are proactive, kind, funny and sympathetic. I’m very fond of them, big surprise! I appreciate that the first day he prescribed a steroid cream to use to protect my skin and hopefully prevent it from opening/seeping/etc. He told us that there was enough data to suggest using it in addition to the cream the nurses gave me and I’m alternating them at least 3 times a day. So far, it’s been working great! He was really pleased a week and a half ago at my last appointment. I’m waiting to see him right now. 18 sessions done. Only 10 days to go!

In which I have a tantrum

Don’t let the cheerful pose fool you. Monday was hard and I was a hot mess. Radiation is going fine- it’s going really well, actually- and after today I will only have 10 sessions to go. More about that in a minute. 

I had a follow up PT appointment with the three kinds of measurements to see how I’m healing from the surgery last fall. My arm felt much better to me this time whereas it had felt tight last month, not like I-exercised-and-need-to-stretch tight but more like sausage-in-a-casing tight. It didn’t LOOK swollen, but it felt like it was to me, so I was unsurprised when my numbers were a bit higher. The team said not to stress, that I’d come off of chemo and so forth so there were other factors and that they’d see me in a month.

Being that it felt more normal, I was blindsided when the numbers came back even higher. It still isn’t in the lymphedema range, and the gal running the tests saw my whale-eyed expression and hastened to assure me that radiation causes inflammation and it’s okay and I’ll wear a sleeve for 4-6 weeks and they will reevaluate, reminding me that “you can do anything for 4-6 weeks” which is exactly the advice I personally have given other people but said “a year”.

I took it as punishment in a sense versus something preventative that will benefit me. It’s FINALLY tank top season and here I am in a long sleeve after all winter of wearing two layers and freezing. The compression garment boxes tout them as being inconspicuous but to me they’re butt ugly and of course there are “trend colors” on their website but who knows if insurance would pay for a fun one and why would I want one when gosh darn it I’m only wearing it for 4-6 weeks anyway? Once we left, I cried. I was so furious to need it after the surgery didn’t go my way necessitating the lymph nodes’ removal in the first place that increased the risk of lymphedema. Just so mad and betrayed. Stupid body. Get it together! 

Then I thought about how many people out there have worse diagnoses and was a little ashamed of myself. Here I have this fabulous team working with me proactively and I’m throwing tantrums. Then some of you so quickly chimed in about being allowed to vent and that tears are healthy and so forth, and thank you. I’m better. 

Yes, it’s ugly. 

Yes, I’d prefer to go without. 

No, I don’t really think I need it. Yes, I will wear it anyway to give myself the best shot at not ending up with lymphedema. 

So when I talk about my Sausage Casing, this is what I mean. I should probably reframe it as my Anti-Sausage Sleeve, but I suspect I’ll oscillate back and forth depending on mood. I had better not end up with funky tan lines, because we all know those are a priority! 🤣 I also learned real quick to make sure the tag on the sleeve goes against my outer arm instead of trying to bunch into my armpit all day. The gauntlet is tagless and they’re made by the same company. Go figure. 

For those of you still praying, thank you bunches. My skin is still doing very well, is intact and not blistered, and only a bit pink even. Please keep them coming and thanks for being patient in waiting for news.