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!

Two of everything, including skin pictures (viewer discretion advised even though things look amazing)

Two weeks post-hysterectomy, here's how things look. Still chigger bites hanging in there, figures, but my glue-covered incisions are healing well. I saw my doc for the first follow up appointment and she said everything looked great and to keep doing what I've been doing, with one exception:

 I overdid it a little bit last Saturday with walking 3 miles on the treadmill and then twisting side to side to crack my back. Then I had some spotting, which is always alarming, at least to me. So I quit it and haven't done it again and things have been fine. Just keepin' it real, or honest, or something.

She showed me the photos of my lady parts that she took during surgery and can I just say that I think it's so cool to be able to see one's own insides? So neat!

Also getting plenty of wear out of the abdominal wrap they gave me. Definitely nice to have the support when I'm walking. And wonderful to take it off. My doc and I mused about how that's like a bra, but those ALWAYS feel good to take off, haha!

And it's been two months since my last radiation session. My skin looks fantastic and it only a bit more than than the rest of me. It looks much less burned and the lotion is still going on once a day for the most part. I've forgotten sometimes and other days I've slathered it on twice, so it all evens out. 

I'm staying out of the sun and still wearing my sleeve on my right arm. I have another PT check in two weeks. Here's hoping I'll be done with the sleeve for real unless I'm doing heavy household chores or gardening, and I need to remember to ask if they recommend using it for any flights in case I get inspired to go anywhere. 

Thanks again for all the prayers! The healing is going really well on all fronts. 

Enjoy the cooler weather this weekend!

 

"And DON'T underestimate the importance of BODY LANGUAGE, ha!"

 The title is from Ursula in Disney's "The Little Mermaid"- the old animated one I grew up with- and it doesn't quite fit this post but it's close enough for government work. It's too hot and I'm too sleepy to fight with it for a better one. "GETMO; Good Enough To Move On," as Craig Groeschel says at the Global Leadership Conference.

I got a good look at myself in the mirror the other day and had to just laugh ruefully. This is not how I pictured my middle aged body would look. I do remember telling Dada decades ago that I wanted to be "pleasantly plump" and I guess what I had in mind was Mrs. Weasley from the Harry Potter series, though it was way before there was a Harry Potter. I think I desired that because nobody in my entire family was ever plump and I thought it was cute. We are a family of beans. String ones, generally. 

At any rate, since I don't have boobs, the first thing I see when I look down is my stomach. For someone who wanted to be plump, it's still a bit disconcerting. Not the lack of boobs- I'm fine with that- but the amount of belly. Welcome to middle age. 

Added to that, my right arm has been in a compression sleeve for almost two months and therefore looks like a fish belly. While I KNOW tan is actually sun damage, I have always felt healthier with a tan and I am *insert your favorite synonym for "mad" here* that cancer has ruined yet another summer for me and I'm feeling a bit sorry for myself. My sweet radiation doc begged me to not burn because of the radiation I underwent, and that all looks... nontraditional... because half of my chest is "tan" from the radiation and that's the half I'm supposed to keep protected, under a rash guard, with SPF 50 on the parts that might be exposed. The other half is meh tan for mid-July in a normal year, but I have to keep telling myself that it's not been a normal year. And then my white right arm and hand with tan fingers. Gah. Ridiculous.

My hair is coming back pretty well and it looks like even my eyelashes and eyebrows have decided to show up this time. However, I have started one new med and will be starting a second, and hair thinning/loss is a possible side effect. If this goes to Round Three, I don't plan on ever growing hair back out again. I like it short and fuzzy. Makes me happy and boy, does it streamline your morning routine and your Walmart receipt!

*I forgot to mention all my small incisions still glue covered and healing from last week's hysterectomy. Added to all my other scars, you could draw some funky constellations on my body!

To add insult to injury, every time I go outside I swear I get another bug bite. Mosquitoes I can handle. It's the chiggers! My heavens. It's not just me- the New York Times has an article on them and the comments section is full of misery loves company as well as tips for relief. For those of you who live where there aren't chiggers, and those areas seem to be shrinking due to climate change, count your blessings. I think the only reason poison ivy is worse is because you can spread that around whereas the bites stay put. Chiggers like to get you in the worst possible spots- along bra and underwear lines, armpits, in the folds of back fat, along your groin, not gonna lie- I even have two in my buttcrack. Talk about hitting below the belt! My poor mother did some weeding when she visited and ended up with 24 bites herself. I'm so sorry. They itch for about three weeks and the jury seems to think that it's best to not scratch them open due to histamines and less chance of secondary infection.

So there's no red, white and blue here, just fading black and blue bruises from my IVs, pink from the insect bites, and a depressing lack of tan! In the meant to be comforting words of my radiation doc, "not for forever, just for this summer." *sigh* Whatever you say, Doc.

Oh yeah, I have a blog!

 Summer proves both delightful and challenging for me, and for the same reason: the lack of routine. During the school year, my alarm is set for 5:15 and I'm good about getting up when it goes off. Most of that time it's dark because we live in Ohio. I enjoy the quiet, laugh to myself about having to share the single bathroom with three other people in the house where I grew up and delight that I don't have to do that here, and then I get both my quiet devotional time and my 15 minutes of yoga in before other people start rolling out of bed. While it's early, I crave that time and that quiet because afterwards it's anything goes! I might be called in to sub, a kid could miss the bus and would need a ride, someone else might need dropped off at class elsewhere, errands might need run, and so forth. Just life. Nothing seemingly stellar or amazing, but if I don't get that quiet stuff done first, all day long I feel behind and slightly aggravated that I "threw off my groove," to quote one of our family's favorite movies, "The Emperor's New Groove". In summer, there's no need to get up early because there's no bus to catch or school to help out, so I don't set an alarm. Consequently, I wake up all over the place timewise and it's been making me crabby because I feel like half the day is gone and I've accomplished nothing. I guess that's why our identity isn't supposed to be tied up in our occupation or what we do to make money. We are human beings, not human doings. 

Our weather systems have just been parking and idling and playing havoc with allergies, sinuses, headaches, and I don't just mean me. It hasn't really cooled down at night so we haven't opened windows to air out the house and it hasn't rained enough to matter for what feels like weeks. The predicted rain seems to continue to not materialize despite my weather app showing more rain clouds than not. The poor dogs are SO hot, Honey especially. I've tried opening windows first thing, but as first thing isn't as early as it would be 9 months of the year, I got a faceful of "soup" (humidity) so the window got shut pretty fast. I know it won't last forever, and I despise being cold, so I'm trying to not let it get to me, but it irritates me to be boiling outside and then freezing inside because of the AC. Yes, I know it's a #FirstWorldProblem and there are people with actual hardships out there, but as my blog is free therapy, I may as well get my money's worth. Wait...

I've been telling Dada that this summer of 2025 is my Summer of Pout. Not much is looking like I expected it to look by this point in the year. I assumed (ha, there's my first problem) that with the end of the stereotypical cancer treatment that I'd get to go on my merry way, maybe with some new longterm meds, but otherwise unscathed. 

Fool.

I didn't count on my right arm measurements landing me in a compression sleeve during tank top season. I didn't anticipate wearing a rash guard on vacation and not soaking up every available sunbeam to help get me through Ohio winters (because that's seriously how my brain works- I am solar powered!) I also didn't foresee having the rest of my lady parts being evicted and starting menopause for real, having already been in chemically induced menopause from chemo. Twice. And because the eviction is surgical and not magical, that means no baths or getting in any bodies of water for swimming for the rest of the summer, essentially, as our pool closes when school starts. I wasn't allowed in until my radiation blasted skin healed and now I won't be allowed back in. Another #FirstWorldProblem, but definitely a contributor to the Summer of Pout. I don't even get in a lot of the time normally, but now it's the "I can't" factor.

Also, high protein diet yet again to prep stores for healing after surgery, and no alcohol. Why do I only want it when I can't have it? 95% of the time I'd take ice cream over a fun drink, yet here we are again needing to abstain medically. Yes, I KNOW it's actually a poison and isn't good for anybody anyway, but I have a six pack of those fun, colorful Smirnoffs and I just want one. Grrr. *sigh*  #FirstWorldProblems!

With the lady parts eviction comes the "no driving" mandate until I feel better and am off any heavy painkillers, which I don't even want to start taking, so of course that's when band practices start up. Would you believe that there are already SCHOOL SUPPLIES in stores?! I don't want to talk about it. I want to kick something. Like a box of school supplies or something. It is not even the middle of July!

Now that I sound like a total Debbie Downer or Negative Nancy, let's pivot to the blessings. 

We had a lovely vacation in OBX again and there will be post(s) about the ocean and all that. We got quality time with my brother who hadn't joined us there the past few years. The sweet old man dog at the beach house is still alive and kicking and will still smile over his shoulder at you when you give him butt scratches. The young pup will play until she drops and was also happy to see us. We missed my aunt who was traveling on her own adventures at the same time, but enjoyed all the talks and time with my wise uncle who gives fantastic hugs. My great aunt, who will be 96 at the end of this month, is also holding her own and we had a few hilarious visits with her. I want to be back there already.

We have gone to the pool a handful of times and I've gotten in once to float along the lazy river. In my rash guard. But hey, I got to get in! Maybe next year will be better. 

Thing Three had his annual Dr Jon appt and he's doing really well. All our kids are string beans, so he weighed in at 113# and 5'8 and 3/4". He's freshly 15 and is all limbs and feet. He's changed so much just in the year since Thing Two's graduation that my brother thought he WAS Thing Two when he first saw him. Completely cracked me up.

Thing Two has been improving with the driving practices. Still unsure about what this fall holds for him school and workwise. Sometimes life is TBD!

Thing One has met an online friend in real life, which is always an adventure, and they've been hanging out a good bit. I know a lot of art is happening! 

I'm thankful that my arm measurements were trending back down closer to my normal and that I never made it into the actual red zone for lymphedema. I'm back in the green, but just by a hair, so the recommendation was to keep the compression sleeve on and do some exercises. The sleeve in summer is a right pain in the butt, but I do know that it's to help and not frustrate me. I'm trying to get back into my yoga and quiet time routine because downward dog and child's pose and so forth are exactly the stretches recommended. Two birds, one stone, etc.

I'm thankful we have a home. It's easy to take for granted until you see footage of Gaza, Ukraine, Sudan or the floods in Texas or whatever the next disaster is that rolls in. Trying to be thankful when things are going like they do everyday, not just when something big happens. Or doesn't!

I'm grateful for my "elite of husbands" and the time he's taken to haul me around to all these appointments. He has every right to be crabby as they're cramping our style, but he cheerfully escorts me around and I don't know what I'd do without him. Love you, babe.

I'm excited to have breakfast with some girlfriends on Monday morning. That should be a thing. Everyone should get breakfast with their friends on a Monday morning! I bet attitude and productivity would improve across the board.

I'll try to not let it be a month before I blog again. We are doing well. Thanks for checking in! If you want something to pray for, please ask for the surgery to go textbook smoothly with no complications, no infections, etc. We appreciate it. I'll keep you posted.

I'll end with a joke Thing Three told me:

What's the difference between a snow man and a snow woman?

Creepy photos: spiders and skin- not for all viewers

Don't you just love it when you find friends while cleaning? These guys heard there was going to be a party. I'm glad to assure people that they were vacuumed up before any party guests arrived!

I think these were taken at least two weeks after radiation. Skin is looking really good! 

 

Loud pants and healing skin *photos are viewer beware*

 Monday I had an appointment with my oncologist. She was pleased with my blood work, how well radiation went, and my general outlook on life. We talked about plans going forward, including alternating PET scans with circulating tumor scans. She said as of now I am showing "no evidence of disease" which is where we want to be, but which I take with a shaker of salt anymore because that's how I'd always presented until we found the new tumor last spring. It's been over a year of cancer stuff. Again. 

Anyhow, I wore some loud pants that I bought last summer at the beach. They're super soft and just about perfect except for a lack of pockets. One of the kind gentleman volunteers complimented me, saying, "you're rocking that pattern!" I thanked him and told him that a bestie of mine had a similar pair in black and white, and that when I asked how her day went she'd replied, "nobody heard a word I said all day. My pants were too loud!" Bless his heart, he laughed like it was in the top 5 funniest things he'd ever heard, and then reiteriated that I was rocking them. And people wonder how I could love my medical teams...

For the photos below, a whole week had gone by post-radiation and if you recall the previous photo I'd posted with just one small circle of peeling in my armpit, well, now you can see how that circle had grown and I'm shedding like someone who got snapped by Thanos. 

 It is amazing to me how something can look both better and worse at the same time. I can tell it's healing, but man, about two or three days before these were taken, everything looked TERRIBLE. I'm glad I didn't take pictures. My radiation doc was right on when he said the symptoms would peak that week after and then recede. I'd say 4-5 days post-radiation was the worst. I look even better than this now but am going to wait until Thursday to take any more photos. I think the peeling will be done by then.

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!

 

A bit premature… and a muffin

Let's start with the muffin. This quiet, unassuming, wrapped a little bit fancily, muffin. Looks chocolate, right? Yummy? 

Looks like a staring contest or the beginnings of a shakedown against my handsome hubby...

Anyway, this quiet little muffin was full of hazelnut! That's right, someone stuffed it full of Nutella and it was melty on the inside of the moist, fluffy cake with an almost crispy outside and ... I think I fell in love a little bit.

I like that it even looks like a swamp thing puppet of some kind if you use your imagination. 

 The premature part in the title of this post was I thought I had plenty of stickers and markings before? HAHAAAA, apparently I know nothing of how many is plenty because I got another round!

I even have markings in my armpit though the girls reassured me that no stickers would stay on in there so they wouldn't even try to stick any. 

The photo below has additional arrows edited on so that you can maybe see the line on my skin from the previous radiation. During photon radiation, they lay a bolus over your skin that is to be receiving treatment and its edges would have lined up with the line on my side there. My doctor explained it's the difference between the skin on the back of your finger versus the skin on the side of your fingers that you feel everything with. It looks like a faint sunburn. I wanted a pre-treatment photo so I could keep track of how crispy I get and how quickly. Morbid, perhaps, but if it helps give someone else an idea of what to expect down the road, then it'll have been worth it. 

All things considered, lookin' pretty good going in!

A victory and a plan

*Viewer discretion advised- not all photos may be appropriate for all viewers*

Sorry to those of you who've been so patiently waiting for proof that I'm still alive and that chemo is done. YES! 

It is finished. 

I rang the bell. 

I hugged the nurses. 

I don't have to go back until June.

No more of pretending to be a rooster when I'm there with Thing One:

No more sucking down ice chips and holding bags or gloves of ice for an hour whilst wearing my compression socks:

No more hard drugs straight into my bloodstream, haha. I've been sent along the treatment road to the next thing, which will be proton radiation starting in a few weeks, every day during business weeks for the new, temporary normal of 28 days unless the machine decides to take a break, need maintenance or otherwise be uncooperative. I've already had my CT scan appointment for rads treatment planning purposes and the team stickered me up accordingly because I'll be matched to precise specs for the machine I'll be on each time. Somehow the stickers are supposed to stay on for weeks and I'm not to scrub them off. Every tiny itch I have makes me stop and think, "is that a sticker I'm scratching?" Doubly entertaining as I have an adhesive allergy but so far *knocks wood* so good, doing okay.

                                                  

It was the highlight of my appointment yesterday (my surgical follow up from September) when she asked how I was doing and I got to flash her from the nicest hospital gown I've ever worn while telling her: 

                    "I got all fancy for you!" 

She felt me up (that's part of her job) and declared me to be doing very well and that she wanted to see me again in 6 months after everything is done. I think the visit lasted 7 minutes total, but to be fair, I'd scheduled it thinking I'd already be there for radiation because I'd mistakenly assumed I'd have started already. Kind of on me- I got incorrect intel. What can you do? 

Next up will be a check in with PT to make sure I'm not developing lymphedema, which will also be a potential side effect from radiation- all kinds of good times around here- and a check in with my plastic surgeon for my 6 month follow up. In my case it's been 7 but again that's on me for scheduling the best I could with the info I had at the time. Then I have the "dry run" rads appt and it's off to the races.

Some things to pray about if you'd like: 

* that I don't develop lymphedema in my right arm or my chest

* that my brachial nerve isn't damaged by the radiation as that could lead to weakness in my right (dominant) side

* that I don't end up with any rib fractures as again everything gets exposed to the radiation and the risk for that increases. This will be my second kind of radiation and  another month of doses so my risk will be higher than other patients'.

* that the skin burns won't be too bad. Last time it didn't get bad until very close to the end, but again, I'm already compromised on that side from the previous rounds so my skin most likely will break down faster this time. I'm stocking up on the good lotion already and have been told to up my protein going in so I have plenty of stores to heal from. Why do I never get to store up on carbs? *sigh* 

I'll try to do better about keeping you posted, and I intend to blog more tomorrow, especially the storm damage photos. No worries, our home is fine, safe, snug, but we lost some trees so I have photos to share. All is well!

Chemo #2, check!

 Okay gang, I'm officially halfway done with the AC part of chemo. Two down, two more to go. This time I get a three week break before my next one so that I may feel like myself and enjoy my favorite holiday with some of my favorite peeps! Yippie! 

Dad got to go with me yesterday and kept me company through all the sitting around. I reminded my nurse about "a slow steroid, please" and she said, "oh, no worries, I ALWAYS do that one over a 10 minute span- I don't push it!" There were no issues, no turning tomato red, no weird tingles, nothing. I felt like my heart was beating just a little fast during my bag of Pepcid, which I don't remember happening before, but it could just be the massive chemical dump that was happening and it didn't last long sooooo...

My doc was thrilled with both my bloodwork numbers and my range of motion. It's so nice to have a cheerleader like her. I don't know what parts per million or whatever the units are supposed to be, but my white blood cells were 9.9, hemoglobin is supposed to be at least 10 and mine's 12.3, and platelets are to be over 100 and mine were 167, so she was actually cheering when she read those. I guess those are the magic 3 that they keep a close eye on. 

We talked again about radiation and I told her we have our second opinion consult tomorrow morning. She said her very strong vote was for proton therapy. It'll be interesting to see what Dr. P recommends tomorrow.

We also discussed having my lady parts- ovaries, tubes, and uterus- out in the future, but it's not an immediate thing. At this point, I told her I feel like a Mrs. Potato Head just ditching pieces left and right. "Well, don't need THOSE anymore and who needs hair and I don't need THAt and..." My Dad and my doc both cracked up, but it's the best mental image I can summon up to describe my poor old bod at this point! 😄 As if to drive the point home, my period started today and I find myself musing about the absolute indignities of cancer treatment and planning and all of it:

- mosquitoes who bite me don't even have the decency to die thanks to the chemicals in me which I find absolutely unfair.

- I have no body parts capable of feeding an infant yet my ovaries and uterus care not, apparently, and just keep chugging along though that ship has not only sailed but has been used as a funeral pyre, lit on fire, and sunk. Yet here we are. 

- I got to discuss my bowels and my periods in front of my father, poor thing.

All of it is weird. But I have the best team, the best tribe, a big God and far too much food and I am hanging in there! 

AND happy birthday to my precious Mommeeeeeee today! We all send birthday hugs home with Dad. Miss you and love you bunches! 

Happy hump day, everybody. Take good care of you!

All I need now is a torpedo

 The radiation consult went... well? Hard to say when we still have so many questions. I need to set up a second opinion/pick your brain session with my local doc here who did my photon radiation the first time around. 

I was impressed with both the research student and Dr J. They were upfront about there being very little longitudinal data because proton therapy, which they are recommending, is a newer technique. They've been doing it for awhile at their location but just opened it up a few months ago to breast cancer patients, so I'd be part of something... new? Fresh? Exciting? Terrifying? 

"All of it, Frank." (That's from "Father Goose", another childhood favorite which stars Cary Grant and Leslie Caron and comes highly recommended! We use a TON of the lines from that one on a regular basis.)

As my charming husband likes to remind me on every possible occasion, I was four chapters behind in my college physics class my freshman year when he visited. Therefore, I'm probably not the ideal person to spell this out, but if I have the general gist of the science, then photon therapy (that I had the first time) is essentially the same dose over designated area. I had 33 sessions, once per day, of that over several weeks. 

I claim ZERO understanding as to how a photon torpedo works, which is what I keep hearing in my head thanks to years of my mother watching "Star Trek"...

Proton therapy, I guess, targets more specifically and then the energy drops off more quickly, in theory sparing some damage. That's a good thing because what is under where they're targeting? Oh you know, my heart and my lungs. No big. 😏Again, I THINK I have that right. They can focus it like a mountain versus a plateau. Yeah, let's go with that. All I need to do now is write "Radiation for Dummies", hehe.

Dr. J recommends the proton therapy this time over photon therapy and that would be twice a day with at least a six hour window between sessions because in that window healthy cells can repair themselves but cancer cells can't. I think that is fascinating! How cool is that? Because it would be twice a day, I'd be done in about 3 work weeks. 

"But I thought... but we'd been told multiple times that you can't re-radiate an area that had already been radiated. Won't that damage the bypass surgery that I just had? Will insurance cover any of this? Why is one better than the other? Would either work? Why do you recommend one over the other? What SHOULD we be asking that we don't know to ask? Argh, why isn't there statistical data yet?" 

Those questions and more swirled around the room as we chatted. Dr. J seemed very knowledgeable and earnest and asked great questions. It sounds like he was on the tumor board so he's already heard of and talked over my case. As always, I marveled at how I felt seen as myself and not simply a patient number on a file somewhere. Truly these medical professionals have callings and not just occupations. I'm so thankful for their passion as well as their compassion. I also appreciated his earnestness. 

I'll keep you posted but that's really all I know right now. No studies to really compare, so until I talk with my local rads doc, we'll just bounce that beach ball of photon versus proton around... *doink doink doink*

Smoke detector reminder and other stories

 I am a little alarmed at how early the chemo side effects have set in. I worked on that previous post twice and still forgot to relay the funny story. *sigh* Bear with me, folks.

One of the 4 anti nausea drugs in the premedication umbrella-

-which makes me laugh because the wording is funny. I only get two chemo meds. I have four anti nausea meds. And they're called the "premedication" part? Hahaha! I am definitely living yet again the courtroom scene from "What's Up, Doc?" where the Judge is lamenting his drug dependence. If you haven't seen it, go track it down. Here's the specific snippet I mean but the whole thing bears seeing.-

-is apparently a steroid. The first med is a quick push one and went into my port just fine in a matter of less than a minute. The second one, the steroid, made me feel burny and tingly in places that I knew I didn't have a UTI so I assumed it was from whatever drip I was getting and that it was temporary. However, then I started to feel flushed and began to see tiny sparkles. My Doc was talking to me, my Lisa was there, there was also a pharmaceutical student present, so I interrupted to announce, "Um, I'm starting to see sparkles and it feels like I'm breathing through a straw...?" They all looked closer at me and the Doc says, "oh yep, turn that medication off and get a nurse." The meds get shut off, I feel the heat start to drain back out of my face, and the arriving nurses reassure me that I just got that steroid too fast, it's already in, all will be well. Note into chart about a slower steroid. Got it. Okiedokie. Whew, hot flash. My Doc uses it as a teachable moment and points out how my color is already better, asks if I'm also experiencing burning and tingling, and yes indeed, it was a reaction to receiving a steroid. 

"Have you ever had a steroid before?"

"Umm, I don't think I have, actually!"

She assured me that oral ones for, say, poison ivy or some such would still be fine, and reiterated that this one was just pushed too quickly for me, but my body has since caught up and all is well. Moving on...

Everything else was fine, no surprises other than I expected a hanging bag of Red Devil and it turned out to be in a syringe that the lovely nurse has to physically sit there and push over a few minutes, which lessened the impact of the googly eyes since we were the only ones who could see them, haha, but oh well. 

However, try explaining later to your husband about a steroid reaction and then have him turn to your bestie questioningly and have her answer, "she was redder than her sweater." Poor love of my life. But now we know. AND I was right about the burny and tingly feeling dissipating right away.

So Daddeeeeee, when you're up next time, we will ask for a slow steroid. No worries! I got you!

That was all on Monday. Some of those anti nausea meds last for 72 hours so the next few days I felt... chemically... I guess is the best way to put it. Not truly nauseous even when they wore off but felt like I could be, so I took some of the prescription they'd sent me home with, heeding Dada's advice to "not be a hero" and Lisa's advice to "stay ahead of it."  I'm eating a ridiculous amount of small meals and can absolutely see why the Doc cautioned that these particular chemo meds can make people gain weight: it feels better to have something in my stomach. She also warned that chemo weight is harder to lose than regular, but finished with "but I'm not worried about you because you're active and you'll be okay." I devilishly mentioned that the holidays were in between now and when I'll be finished so who would ever know if it was the chemo or the yummy foods? Hehehehe. I'm again struck by how similar chemo is to pregnancy: nausea, brain fog, weight fluctuation, craving something but not having any idea what, laying down to close your eyes and awakening hours later.

Thank you to my school friends for the ginger chews and to my friends who've sent candies and to my hubby who found me coconut bites. Y'all rock, as usual!

Yesterday, four days after chemo, I woke up and felt like my brain was actually clearer and more myself. I still feel that way today and haven't taken any meds other than my usual allergy pill, multivitamin, and calcium with vitamin D. I've had my breakfast and am cautiously optimistic for a nice weekend. My Doc said to keep track of what I felt when so we can determine "my pattern" and predict what I'll need and when. 

Next week I'm scheduled for a bag of fluids and a blood draw, both through the port so no worries, and my radiation consult. I have extremely mixed feelings about all this radiation business. I've heard from several sources that you can't re-radiate the same area, so why the tumor board wants me to have a consult about it boggles me. Plus, they mentioned I could be a candidate for proton therapy, but when I look that up it says it targets a tumor, which I no longer HAVE, so again, I'm stymied. Guess that's why I gotta talk to the experts. I asked my Doc about it during chemo and she set me straight: don't dismiss it out of hand. We want to throw everything at this, so go see what they say. 

Yes, ma'am. 

As far as the whole armpit area/ bypass surgery part is going, it's been 6.5 weeks since surgery and range of motion is definitely improving. I'll get some pictures up at some point, but things are looking decent-ish. I'll never win any Sex Goddess Body awards but since I was never aiming for that anyway, no big loss. I'd rather have ice cream! 

Moving is definitely better for me than sitting, and sleeping is wonderful. Enjoy that extra hour this weekend and do NOT feel guilty if you use it for sleeping! I'm waving my wand over here and giving you permission to use it however it will most bless your life. *swish swish* Don't forget to check your smoke detectors and have a wonderful weekend, everyone!

Waxing philosophically about pathology results and impending nuttiness

 Eggs, eggs, eggs, eggs. 

Just kidding. I know what I need to blog about. I just dontwanna. 

Short version, think "The Princess Bride" where Prince Humperdinck tells the priest, "SKIP to the END," I need chemo. Again.

Longer version: my surgeon, Dr A, removed 16 lymph nodes during her two parts of my surgery. The first 4 were not true sentinels, as those had been taken out during my mastectomy surgery. The other 12 from the second part of her surgery were all clear, so hooray for that! Yay!

Of those 4 closest to the tumor, 2 of those wiseguys had picked up some cancer in their cleanup duties. Guess I should have had it marked "NO TOUCHIE" a little better, but they handled it regardless and got contaminated. 

Once the pathology came back, Dr A took the results to the tumor board that meets Thursday evenings. I had prayed that there would be a clear consensus of YES, chemo is needed or NO, chemo is not needed. I did not want the board to be split down the middle and then be asked, "what do YOU think?" I hate making medical decisions. I don't have a degree in any of that stuff! Just tell me what to do!

Fortunately, they agreed that chemo would be the way to go. Now I'm waiting for the Powers That Be to schedule my port surgery, this time on my left side, and then I can begin chemo the next day. I suppose there will be pre-op bloodwork before that, so here is the sarcastic yaaaaaaaaaay. 

Because I am no longer Triple Positive (I am estrogen positive, progesterone positive, and Her2neu negative for those new to the blog or who have lost track, and who could blame you?) I will need a different chemo cocktail than the first time around. That time I had Carboplatin and Taxotere as my chemo drugs and Herceptin and Perjeta as my hormone therapy drugs. This time it'll be Adriamycin and Cyclophosphamide (which I will never be able to spell without looking it up) every two weeks until I've done it four cycles. Then there's probably a break in there of about two weeks before I start Taxol weekly for 12 weeks. Then it'll be on to the hormone therapy, however that looks, but I seem to remember it'll be in pill form.

I shall be bald by Thanksgiving and hopefully done with the AC combo by Christmas providing I tolerate it well and don't get sick and wreck the schedule. I'm going in confident because it'll be the same team who did my chemo the first time and they are excellent at setting patients up for success in anticipating which side effects hit when. For instance, they know "these three days you will have the worst nausea so take these drugs these days, then this day the bone pain will set in so take this one," and so on. They equip you with a great bag of tricks. Plus, I know to drink TONS, rest when I can, stay positive, and all that. 

AND AVOID ATOMIC FIREBALLS. NO TOUCHIE.

My goodness, I don't want to relearn that lesson. No breathing fire, thanks. Mouth sores are a possibility so it'll be time to restart the baking soda rinses and all that jazz as well. I have wonderful lotions to help my skin stay hydrated, plenty of lip balm... and I'll need a box for all my hair products, haha. Oh well. Hair In His Face is welcome to them, though he is such a minimalist he'll never touch them. 

More than anything, right this second, what I want is for the doctor's office to call so I can schedule what needs scheduled so we can plan around it all. I have Stuff To Do! So. Much. Waiting. I'm still no good at it.

Guess I'll have time to catch up on my reading list. I am only 13 books behind my goal for the year. *sigh*

A friend asked how my heart was. Heart is fine because I know this will all be okay. I'm stronger going into this than I was the first time around and that all went fine. I know whose I am, who's got my back, who is cheering me on from afar, and so on. Heart is pretty peaceful, actually. 

It's brain that would like to schedule a freak out session, preferably in the middle of the night when I should be sleeping: 

What if I don't tolerate these meds? What if I'm vomiting or pooping ALL THE TIME? (Then the docs will adjust doses and/or meds and it'll get fixed and be fine.)

What if they affect my heart? I've already had a year of Herceptin and that had potential for heart damage. Yes, I KNOW the last echo test was fine. That was then. (They'll be keeping track of heart stuff, as well, scheduling more echos to keep an eye on things. It'll be fine.)

What if my hair never grows back? It didn't come back the same this time, and eyebrows and eyelashes hardly came back at all. (Meh. Then you have a super easy beauty regimen for the rest of forever. Don't sweat it. There are wigs. There are falsies. There are eyebrow pencils. Do you REALLY care? No. It'll be fine.)

What if I miss an entire year of subbing? (Ugh, okay, I'm with you on this one. I miss my small friends and my peer friends, a lot. I also don't want their germs, which are legion. Then you miss a year, I guess, but they haven't forgotten you as evidenced by your text streams and visits and care packages. They know you love them, too. And you might be back to yourself by springtime! It will be okay.)

I can't believe I'm putting my family through this again. (They are also in good hands with a good tribe at their back. Again, your team knows what they're doing. It will all be okay. Not great sometimes, but okay. You can keep talking about it to make sure THEY are okay, too.)

What if it spreads elsewhere? (Good grief, brain, shut it! *sigh* Okay, if it spreads elsewhere then your team will deal with that as well! Go to sleep!)

And a radiation consult? Potentially proton therapy? What is up with that?! (That is another post altogether when we have some facts.)

But what if...?

And so it goes. 

But that's life, right? There's no stopping the world to get off for a minute to reorient yourself. Y'just gotta take another breath. Take another step. Write another thank you note. Pray for someone else. Text another friend. Have another cup of coffee Go drink some more water. Eat some ice cream. Go for a walk. Make a grocery list cuz God knows nobody else around here adds anything to it. Read a book. Take another breath. Drink some more water. Give yourself permission to take a nap. Phone a friend and ruin their day because SOMEONE CALLED THEM, haha. Tell people you love them. And breathe again.

Wash, rinse, repeat. 

Enjoy the bubbles.

Merry Christmas 2019

Merry Christmas and Happy New Year from We5! Like you, our year was busy. January/February/March brought 7 snow days plus a smattering of two hour delays, a new fireplace and stone work, and a freshly painted library/living room which we'd originally had no intention of changing. We removed the wallpaper from the longest wall in the entire house in May and then I painted the kitchen and sunroom during the last few days of school. Remind me to never attempt any large project during the end of school again! Dada spent some time in Mexico City in March, in June the two of us spent 10 business and pleasure days in Bogota, Colombia while Pap watched the kids, and in July we joined some of my family for our annual trip to the Outer Banks, NC.

The kids started fourth, eighth, and eleventh grades in 2019 and the school year is half over already! Thing1 continues to love working at the karate academy part time and has created a niche for herself in digital art, having thousands of followers and having only started this autumn. Thing2 can be found with his nose in a book in just about every situation except the shower. He is still incredibly creative with all things Lego, to the point where we are wondering if we need an intervention. Thing3 still curls up in whatever rocking chair he is closest to despite the fact that his humungous legs and feet don't fit anymore. He is obsessed with all things Nerf and  I find blasters and foam bullets in the oddest places. The tide of Pokemon cards ebbs and flows as well, much to my dismay as I wasn't a fan 20 years ago and I can't fathom why it's still a thing. 

Honey, the Great Pyrenees we rescued in October, continues to give us a run for our money. We were told she was crate trained; she is a complete Houdini who has yet to meet the crate or the baby gate that can defeat her. Bosley, our two and a half year old shepherd/hound/whatever mix, is thrilled to have a live-in buddy to play with and is secretly pleased to be in his kennel and thus not blamed for whatever havoc Honey is wreaking from the aforementioned potato incident and Halloween candy fiasco to the Christmas Eve eve's decorating the sunroom with seeds for the garden. Damon would send her back in a heartbeat as she also most often wants to show her affection directly after having gotten a big drink and thus being adorned with strings of drool. The rest of us sense quite a bit of potential and are trying to keep calm and carry on...

Dada spent a lot of the fall traveling for work to Streator, Mexico, Canada, and Zanesville. While he's excited to be off the rest of the year, we're saying the same thing we say every year: we need to be better about taking time off throughout the year so we don't have a million days at the end! He spent quite a few early Saturday mornings joining some other guys for rucking, which is hiking with weighted backpacks or "rucksacks" but then his travel schedule got a bit crazy and that fell by the wayside. 

Our home group sort of dissolved over football season so we decided to start hosting Friday Night Games to make better use of all the board games and outdoor toys we've accumulated over the years. To be honest, we've been a bit disappointed by the turnout as we'd hoped to be another safe place for kids to come and hang out, but between football and band and kiddos going to a different parent's house for the weekend, we've ended up alone watching movies or playing games ourselves more than we anticipated. I guess that's just the way life goes sometimes. Maybe winter will provide a better turnout as people want to have something warm indoors to do, but I can also see it going the other way where people finally make it home after a long week and have no intention of leaving the house, choosing jammies instead. Time will tell. If you're around on a Friday night, come on down! We'd love your company!

Healthwise, it's been a year this week since I finished radiation and began taking Tamoxifen. I no longer get infusions of any kind having finished my year regimen of Herceptin and Perjeta in May. Once I finished those I began a single year regimen of oral Nerlynx so I'm over halfway done with that. I saw one of my oncologists right before Thanksgiving and he declared me "perfect", haha. I'll take it!

We've already had two snow days this school year, one even before Thanksgiving, and if you count weekends our Christmas break is 17 days long. It seems we don't start off the New Year with terrific weather and add more delays at least right off the bat to extend that break even longer. It gives one plenty of opportunities to practice one's resolutions of patience, if one were foolish crazy ridiculous going that route for self improvement. Heh.

We wish all of you the very best of the holidays with the friends, family, food, fellowship, and fun that you all deserve to be showered with. Please be safe and have a very merry holiday season and a fantastic 2020!

Photo credits go to the lovely Amy Fowler Shores at Seaside Topsail Photography who drove hours to come play with us while we were at the beach! Thank you so much for a terrific evening!

The Jonah talk

Since I'm behind, might as well go way back. June 6 I told Dada we were going to go on a date and that he should leave that blocked into his schedule so he wouldn't be tempted to stay late at work. He said, "yay, a date!"

I told him very little else and we drove to a local church. We received a program for the evening and there were a few faces he recognized as I was getting hugs.

It was a cancer survivors' dinner, our very first one, and we had a great time getting to know the other couples at our table, having our picture taken, and a delightful dinner. 

Some of my friends spilled the beans and revealed my secret: I was one of the guest speakers for the evening. Some of you may have seen a picture of me on Facebook with my mouth open, haha! Dada was pretty impressed that I'd kept it secret even from him. He likes surprises. I do not.

I'd thought and prayed a lot about what I wanted to say. I didn't want the message to be focused on me. I truly wanted every person there to hear whatever God wanted them to hear and not have it be about me. What follows is roughly what I told everyone that night:

Mike called me in March to tell me about this dinner and to ask if I would consider speaking in front of 150-200 people. My very first thought was, "yikes!" My next thought was, "wait a minute. You've gone through chemo, surgery, radiation, new meds, and you're afraid of a little public speaking?" My third thought was, "yes!" I asked him what people generally talked about as I've never been to one of these before. He answered, "survivorship." I asked how long I had to think about it and he said he'd need to know by the end of March. I thought it over for a week and called him back when I least expected him to be in the office so I could tell his voice mail that, yes, I'll give it a try.

Then I told nobody.

Eventually, as I mused about survivors, the story of Jonah came to mind. Most of you are familiar with the tale. Jonah receives an assignment from God but he has no intention of going to Nineveh. He boards a ship and heads as fast and as far as he can in the opposite direction. God seems to say, "okay, we're going to learn this one the hard way, are we?" He sends a storm. The sailors do everything in their power to save the situation but fail. Jonah ends up thrown overboard and, instead of drowning, is then swallowed by a big fish. For three days and nights he is inside the fish before being spat out, and then he wisely decides to fulfill his mission. He delivers his message, the city repents, and instead of being pleased, Jonah is angry and bitter and complains about the Lord being merciful.

I thought about how many parallels there are between Jonah's story and my cancer journey. When first diagnosed, it's a natural reaction to want to deny it or to not want to deal with it at all and pretend everything is fine. Generally, though, major health issues don't resolve themselves on their own, so men, yes, I'm talking especially to you, get yourselves checked out if you are having issues. Eventually you have to get the experts involved. In Jonah's case, they were the sailors. They knew their rigging, the weather, those waters. In our case, it's our medical team. They're up to date on the procedures, the meds, the techniques, everything they need to help heal us. However, like the sailors, they are only human beings and some things are out of their hands. Perhaps it is unfair to expect perfection, though they do very good work. 

Jonah ended up in the sea and then in the dark in the fish. Here's the storms of uncertainty, the unknown, the millions of questions swirling around. "Will I be able to handle chemo? What will the new normal look like? How will everything look after I go through this? Will I even make it through this? What if I don't?" It's terrible to be in the dark of the storm, but God in his mercy doesn't leave Jonah there and he also doesn't leave us there. 

We come out of the storm and continue our path. In our case, it's our rounds of treatment. We go to the doctors, we listen to our team, we take our meds, we have the surgery, we do the thing. 

Jonah delivered his message and pouted and sulked and was bitter about the results. I think a lot of people would be happy to give us as patients a pass from doing too much. "No, you need to rest." "You're still healing." "Take it easy, don't overdo it." I think we forget that helping others also makes us feel better. I hope that your journey doesn't bring bitterness and self pity about "why did this happen to me?" I may be preaching to the choir as you're here tonight to celebrate your survivorship, but I would encourage all of you to find someone or something to contribute to, that you're passionate about, and help others. 

Thanks for coming tonight!

...
I won't pretend I wasn't nervous, but I really was excited to see what God did. Even now, a month after the event, it still thrills me that He used me. I'm so glad I said yes to the opportunity. The audience was so warm and welcoming and it makes me tear up even now to remember the sweet little old ladies nodding encouragingly to me while I was onstage. The hugs afterwards from my radiation team and my doctor were especially savored. 

My Mommee mentioned that I'll have no idea who my talk might have helped, and to think that someone in that room who perhaps was there as someone's support system might down the road be diagnosed themselves and they might remember my message of hope when that never even dawned on me really hit home. I hope so much that people realize how much they matter and how much they are loved!