Fun with meds

I know the saying is "when life hands you lemons, make lemonade,' but when the docs prescribe you meds...

make a face!

The face was actually Dada's doing. The teeth on the edges were Tylenol after my hysterectomy. The huge ones are calcium & Vitamin D. The gel one is also Vitamin D, the small oval is an allergy pill, the white round one was Tamoxifen, and the gummies are vitamins.

The top photo collection only differs in that the allergy pill is one of the tiny white ones and instead of the small circle Tamoxifen, I'm now on another tinier white circle that is Arimidex. The orange gel one is a stool softener, required after the hysterectomy lest I pop any stitches if I became constipated. Possibly TMI, but hey, I try to keep things real around here. The two purply non-gummy circles that taste like I imagine mulch would taste are my CDK 4/6 inhibitors (the 3 year pills). 

So yes, I crack up everytime a doc asks me about drug use. Then they clarify about "illegal" ones. Who has time to do illegal ones when it takes me enough time to get all these down as it is? 

My most recent doc visit asked if I used alcohol. I paused before I confessed, "that break week for that one med... I had a drink that week." She smiled and teased, "you could have two." 

I had no idea adulthood would be so thrilling!

 

Wherein I play the role of Mrs. Potato Head. Again.

 In the post about the Chaos Party I mention being (mostly) done with cancer treatment. The mostly part was because while surgery, chemotherapy, and radiation are all behind me, (again), I still have some Stuff To Do. 

Because my cancer has been hormone-driven, my oncologist strongly recommended having my ovaries and tubes out, and felt that my surgeon could decide about the uterus and cervix. Let's face it; I'm almost 50, I don't need any of that stuff anymore, and like Dada said, "clearly your departments aren't communicating with each other because you haven't been able to physically feed a child since 2018 so why do they keep trying to make one?" I couldn't agree more. Enough is enough already. 

My surgeon felt the same. "Why in the world would we leave anything in there to cause trouble later on down the line? No! Let's do it all at once."

"I agree. No uterus left behind. Everybody out of the pool."

So, my belly (and bug bites) Before:

My surgeon also said that she prescribes a bowel cleanse before the surgery. Should anything, God forbid, go wrong, there's less mess to deal with if you're squeaky clean inside. Good times ahead for me and my stack of library books...

The pre-op nurse who called to go over everything told me that they'd be able to use my port. I was thrilled. That doesn't happen for every procedure like you'd think it would. And while they did indeed get my port, which was being stubborn and not wanting to draw blood (it does that sometimes. It'll let you put stuff in but gets selfish and won't let stuff come out. She had to re-poke it, then it gave up and cooperated), they informed me regretfully that because the surgery was being done robotically, that meant I'd need another line started to push meds in case anything unforeseen should happen. 

I told the nurse, "good luck! I have tiny, uncooperative veins and haven't been drinking because of the bowel prep." Bless her heart, she got me on the first try in that lower pink circle, and then AFTER it was all over they do a blood draw to check your hemoglobin status so that is the elbow stick in the top pink circle! Six days later, I'm less blue and purple and more green and yellow.

They applied a scopolamine patch behind my left ear to prevent nausea. You leave that baby on for 24 hours and then peel it off, throw it in the trash wrapped up, and wash your hands. If you touch your eyes the medication can dilate your eyes and cause blurry vision- the opposite of anti-nausea, haha, so follow directions. 

I had other stuff in my IVs and fentanyl for the surgery, which I've had before, apparently, because I asked and they checked. The anesthesiologist had already gone over her checklist with me about myself or any family members who have had trouble with anesthesia. 

My bugger of a port, looking all innocent:

I don't even remember seeing the docs in the OR. Dada smooched me and they rolled me down the hall. I remember going into OR #3, seeing the lights, hearing someone say that Tiffany was already in there, and then looking down my right side as they lined up the bed I was in with the OR bed, then nothing until the recovery room. My surgeon showed Dada the pictures of everything that was removed, and she may have showed them to me but I ALSO don't remember seeing her afterwards, so I'll have to ask at my follow up appointment. Gotta check on my Mrs. Potato Head pieces!

So it's four small incisions for a robotically laparoscopic complete hysterectomy and then everything gets pulled out down below. A camera is inserted into your bladder during the surgery to make sure nothing is accidentally nicked in that area as well, so you do have some burning upon urination immediately after surgery, but by the second day that had already faded for me. 

They sent me home the same afternoon with ibuprofen to take every 8 hours with food, a stool softener to take twice a day because straining during constipation can tear open your stitches and then you have a right mess, and Percoset which I haven't taken any of because for me the ibuprofen/tylenol routine works great. I'm thankful. I thought there would be both more pain and more bleeding, but I have only had twinges and some spotting, no cramps, no gushing, nothing awful! Did I mention I'm thankful? 

Bye bye, lady parts. Well done, good and faithful servants.

Thank you all for your prayers and the well checks. I have the best tribe, as always!

Please pray that I continue to heal well- my follow ups are at the 2 weeks and 8 weeks marks, and I'm not anticipating difficulties there, but I AM beginning a new medicine that I'll be on for the next three years if I tolerate it well. 

It's called a cyclin-dependent kinase 4 and 6 inhibitor (CDK4/6 for short). CDK4/6 proteins regulate cell division and cell growth, so by inhibiting/blocking those proteins, the drug slows or stops cancer cell growth. We are using this because my cancer has been hormone receptor (HR)-positive (meaning estrogen and progesterone driven) and HER2 negative this time around. 

It's a lot of big words, so just picture Gandalf with his staff in front of my regular cells, and bellowing to any stray cancer cells, "YOU SHALL NOT PASS!"

It's a 21 day on, 7 day off cycle, like a lot of birth control pills. Blood counts will be monitored while I'm on it, so my goofy port had better get it together and start drawing blood correctly. There's potential side effects, as with any drug, and these ones could affect heart and liver. I already had my EKG before beginning it so we have a baseline, and my oncologist does blood draws at each visit. 

Fatigue is also a potential side effect, and there's a laundry list of others that I suppose I should read so I know what to watch out for. It's a fine line between knowing what could happen versus scaring myself to death. My radiation doctor is actually the one who put the bug in my oncologist's ear about this type of drug, lucky me; they're conspiring, haha! He had a different brand in mind and my oncologist declared this one to be much less time in the bathroom than the other, so thank heavens for that.

Please pray that my system tolerates it well, so we can do the 3 year stint and be done with it. The reason it is three years is that it's been proven to prevent recurrence when patients have taken it for three years, and there aren't apparent benefits to continuing past then. I'll also be switching from Tamoxifen to Arimidex no that I no longer have ovaries. "Better living though chemistry," is the quote I keep hearing in my head, but I don't know that I believe it, haha! Hair loss is on the list of potential side effects, so it'll be interesting to see if I end up bald for a third time and how long that will last. As usual, plenty of the side effects are "I can deal with" ones like fatigue, bathroom issues for which one can use Imodium or stool softeners, and so forth. There are some more serious ones, as well, such as your heart rhythm being affected (long QT syndrome) so that's a bit worrisome. I guess there's no such thing as a risk-free life, and the meds are to help prevent recurrence. Since I do NOT want to endure a Round Three, here we go!

Here at the end of all things

Not quite. We are more, "and miles to go before I sleep" than Frodo and Sam making it to Mount Doom, but we are chipping away.

I'm done with my Nerlynx prescription, wahoo! Apparently I can't count, and ended up with one last lonesome pill (my dose was three of them daily) as a stray. I guess it just wanted to ease my Tamoxifen and allergy meds into doing without the Nerlynx, ha. So that's a year done. I've been on Tamoxifen for going on 15 months now, so far, so good. 

I feel like for every kid's assignment we cross off, two more take its place. I know that's not really happening, but I am just about done with the kids doin 75-95% of the work and then having to backtrack through weeks of assignments to find the links or the directions or the passwords, etc. You finished it, right? Is your name on it? Did you hit "submit"? Did you click "turn in"? THIS WAS FROM LAST MONTH! Can we please just be done!?

This was the last week they were to receive new assignments, so as of next Friday at noon we are done one way or another. Please pray that we finish strong. 

(Envision a skeleton crawling pitifully, painfully, despairingly across the desert sands. That'd be me. Except it's been raining for days, even on days the weather channel says it won't be raining. This is the lushest desert you've ever seen.)

Send rum.

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!

One month later

These photos were taken a month to the day after my last radiation treatment but got lost in the holiday shuffle otherwise known as Christmas-New Year's-wedding anniversary-and my birthday that goes on around here. I'm still "tan" but have excellent range of motion, am all done peeling, am still using lotion/oil once or twice a day, and have had my follow up appointment with my radiation team. I got hugged and exclaimed over and they declared me doing "really, really well" and that they'll see me again in six months. 

You can see under my armpit the corner of where the bolus covered and between my spine and shoulder blade still has the patch of "tan" from being radiated from below. The armpit part still gets itchy every so often but overall everything has healed really well. I feel like it's fading more from the top down but I can't really tell if that's just how the light hits it or if it's a "true fact" as we say around here. 

My port fared really well. I'm to get that removed sometime in May. I'll be using it into April for the Herceptin and Perjeta IV rounds. I have another echo scheduled this week for my heart, because Herceptin can affect hearts in not good ways. My previous two echoes were both fine, however, and thank you, God. Once the IV rounds are done, the port can come out, and then I'll start a drug that is six pills a day taken at once, in addition to the Tamoxifen that I take every morning now. I'll be on that new med for one year, or at least that's how it stands now. Tamoxifen will be part of my routine for the next decade. Today was Day 44 and so far, so good. 

Hair is coming in, too, but until the darn Ohio wind decides to give it a rest I'm in all my hats and scarves and wraps anyway. I am excited about heading back into school to volunteer with first graders again! Here's hoping Mother Nature settles down just a bit so that everyone can go to school and to work and run errands and do their thing!

Merry Christmas

I'm sitting here, perhaps as some of you are, amidst the Detritus of Christmas Crap. I don't mean that the presents were crap or that the intentions behind them were, either. I just mean I'm sitting amidst the physical mess left behind: two tables heaped with boxes which are themselves filled with bubble wrap, tissue paper, hoping-to-be-reused wrapping paper, new socks, empty glasses, books, Christmas cards, candy wrappers and writing implements. In short, in the Mess of Christmas Aftermath. 

A grandfather is here, outside with the grandsons, partaking in a Nerf war. His dog and our dog are outside as well. Ours is barking madly (the neighbors must hate us), desperately wanting to be part of the running, shooting, laughing and mayhem. His penchant for eating Nerf ammunition has him clipped to his tie-out, far away (hopefully) from any stray bullets. We're all witness to his displeasure. 

Dada is downstairs, testing out new video games with the Care Bear, who got both her highly desired ukulele and her cell phone, given before Christmas. 

We are surrounded by Stuff. Good stuff. Stuff to read, stuff to snuggle into, stuff to eat, stuff to wear, stuff to play with. We are thankful for the Stuff. 

But I suppose this is a post where I should talk about the Stuff that made this Christmas special for me. I finished with radiation last Thursday, which will be another post, and today was Day 5 of Tamoxifen, which is a medicine I could be on for the next 5-10 years as part of my maintenance regimen. It's all good; thankfully they're not huge. I'm thankful the medical community has the knowledge and that we have the insurance which will help take care of me for years to come, God willing. It's been a year of medical magic for sure. 

This is the only Christmas where Damon will be 8, Liam will be 13, and Carrie will be 15. Getting them the perhaps ridiculous things their hearts desired at each of these ages made us happy. When I finish my potential decade of medicine, Damon might not still want Nerf guns and bullets. Well, okay, he might, since he's a b-o-y, but you never know. My point is that I don't want anyone to miss out on what matters most at Christmas. Hug those in your life hard. Tight. Tighter! Nothing lasts forever (and yes, those of you who are trying to get little ones to sleep through the night- even that stage doesn't last forever and you ARE allowed to say hallelujah that it doesn't!)  and tomorrow isn't promised. Say thank you for those little things and the people doing them. From me: thank you to every single one of you for reading, praying, sending cards, sending food, transporting my kids, coming to visit, texting, calling, dreaming up fun gifts, and being your wonderful selves. Thank you for being part of my Christmas and everyday magic. 

For those of you still searching for a little bit more, who are maybe missing some of that magic because you thought the hole you're trying to fill might have been filled by some of the Stuff, try checking out Cedarcreek.tv on the odd hours each day. They are rebroadcasting their services all week long, and Ben has a good reminder about making room for Christmas itself, not the Crap or the Stuff. Listening to it in the background of your Aftermath might help as you get through the rest of the Christmas Crazy. 

Be careful traveling and eating and shopping and recovering and eating and napping and sampling Christmas cookies... you know how it is. Remember that you are loved lots, not just by those around you, but by a Savior who was born at Christmas. Thanks again for being part of my tribe. May your Christmas be merry and bright!