Not lost!

 Sorry guys, I'm kindergarten tired, haha. It's back to school! I'm thrilled to say that I'm also back at school, both subbing and for the month of September at least, being an aide. I'm having a ball in the wing that holds our youngest students, but I also do not have the same energy allotment as the 5 year olds. Attention span, maybe, but definitely not the energy! 

Unfair that kids who fight naps get to have them and adults who need them don't. 

Suck it up, buttercup, I guess.

Anyhoo, our high school home team has lost all three of their football games thus far. The band sure is having a good time, and our kid in particular, who is mainlining Pixie Sticks and sour Skittles and God alone knows what else. Dada and I watched in fascination as he dumped sugar into his mouth, washed it down with Coke, played a snatch of a song, and repeated the cycle with more Pixie Sticks. I'm still amazed the entire bleacher section wasn't vibrating from the vast amount of sugar coursing through just him, but then seeing more Pixie Sticks being launched through the air from one section to another and I can't even imagine how they ever sleep. I bet dentists everywhere rejoice; job security fo' sho'.

My Mommeeee came out for a visit and the weather cooperated so we got to run some errands with blue skies and puffy clouds. September is a favorite of hers. I always wish they could stay longer, but she had good traveling weather and made it back home safe. Thanks for all our treats and Wendy's and your company!

Dada and I putzed our way through the Black Swamp Arts Fest (which we call Dark Arts) both on Saturday and Sunday, perusing all the wares, meeting up with friends, making some fun purchases. Tons of fair food, fun live music, and a Main Street full of vendors, we give it two thumbs up! PLUS, there was a book sale at the library so guess who got more books even though she's already at least 6 books behind her reading goal for 2025... yay! New friends!

Labor Day weekend brought yard work, much to the chagrin of the boys, including chopping off tree limbs and burning them, pulling many weeds and yanking out small honeysuckle bushes. Also got as many small saplings of our zillions of trees out as I could, and gingerly removed dead black raspberry canes. Miraculously, I stayed out of the poison ivy! Soon enough we will be raking leaves or mulching them into the grass, I suppose, but for now we are enjoying the cool mornings and warm afternoons. Especially at recess! Any chance to play outside is a chance I'll take!

My PET scan showed nothing, which is a good thing! My EKG also must have been normal because I didn't hear otherwise. Next month I'll have another oncology check up, and later this week is my 8 week post-op visit from my hysterectomy. I'm fairly certain she will sign me off. 

My two new meds seem to be doing their thing and only causing dried out eyes and nasal membranes. I hope the week off each month from one of them (planned, so that my lowered blood cell counts can recover. You know, important things like platelets) will bring some relief- I'm a little nervous going into the cold season with all the drying effects of furnaces on top of the side effects. I don't want to have to switch meds. One of these I'll be on for forever and the other is a 3 year gig. I'm almost 2/36ths done! Woohoo! I'll let you math nerds reduce that. 

Already had my first back-to-school germs, so I can check that off my list. I had a head cold before the kids even started back. Definitely must be allergic to school. Hehe!

Enjoy the beautiful autumn weather even if it hasn't officially started yet. I refuse to break out my cold weather clothes until the calendar declares it, so I'll be over here in my sundresses with sweaters and leggings. 

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!

Chipping away

Hi! For those of you keeping track or for those of you who are new around here, I am chipping away at the second part of my chemo regimen. My port was a bugger again and I needed cath-flo injected into it. Sometimes with a port, your body will create like a skin or a sheath over it since it's a foreign body. Generally the port still works to input infusions, but the blood draw part doesn't work for some reason. Since you have to have the blood cell count to know if your numbers are high enough to have the chemo, that part has to be done first. So after multiple position changes and flushes, the nurse drew blood from my left arm and eventually the cath-flo stuff busted up whatever clot or sheath was in the way and we could get both in- and output. This is the second time it's happened with this port. I don't remember it ever happening with my previous one. I don't know if it's affected by being on my left side this time, if it's all the crazy chemicals swimming around in my body, or something else entirely. The nurse who drew my blood was amazing- I've had her before- and I seriously didn't even feel it. That's a rare, precious gift! 

My doc was pleased with my blood count numbers and gave me the green light to proceed, so I got my second Taxol infusion out of the way. Ten more to go! Thus far the side effects have indeed been less derailing than the AC chemo regimen which is over with, thankfully. She said I am still experiencing residual AC chemo effects, which explains why I'm still a bit on the slightly queasy side- not bad enough to take anything for, but I can. Usually mints or gum are enough to solve it. The key is to keep drinking, move when I can, and rest when I need to.

In joyous news, which may or may not make sense depending on how you feel about your own job, I GOT TO GO BACK TO WORK! I spent a day this week with a kindergarten class and had to laugh at how much energy these small, cooped up people need to burn off. They haven't had outdoor recess for a good while and it doesn't look promising for next week, either. There were lots of breaks throughout the day for small "dance parties" and time to get wiggles out. A fold down trampoline was also a lifesaver, so to whoever invented those small ones: huge kudos and thanks! Most of them took complete advantage of their three minute turns. I find it hilarious that right now as I'm typing, Van Halen's "Jump" is playing on Pandora!

Anyway, we are all back to school and work and all the things like scraping yuck off our cars and trying to pry open frozen-shut doors. We took advantage of the freezing outside temps to defrost our freezer, leaving all our frozen food on the deck, where it got snowed on. We've brought in firewood to make things cozy and help reduce the strain on our furnace. It's really a shame that we can't ship the snow to the wildfires... 

I've been laughing and lamenting (because those are two sides of the same coin, I think) with my girlfriends about the hormonal changes we are all experiencing. My doc asked about how I was sleeping and I related how I'm too hot, then too cold, then too hot, repeat. She says a complete hysterectomy is in my future, not immediately, but this year sometime. Talk about feeling like Mrs. Potato Head. I'm losing parts like nobody's business! Dada laughs about my departments not communicating; clearly no way to physically feed a child yet the lady parts never received the memo. It's been six years; let's get it together, body! Sheesh. So there's that to look forward to, along with the accompanying hormone therapy. Most likely it'll be Tamoxifen again until the surgery and then Arimidex afterwards. My doc called it my "big girl meds" and cracked herself up. Yay, I've graduated to big girl meds and I'm not even fifty. Way to overachieve! 😄

She was pleased that Dada accompanied me this time and said he was among the elite of husbands. She reiterated how much my success depends on his support and we both talked him up a little. I think he liked it. Totally true, though. I married up.

She said that as the AC chemo works its way out, my energy should increase and I am seeing some of that already. She said by next month I should be feeling much better. I asked if the Taxol is cumulative as in "how crummy am I going to feel by the end of March" and she said that the only thing cumulative about it is the neuropathy, which so far, thank God, I'm not experiencing. She says that's because I'm young, but said she used ice baths for her feet and hands and a cold cap when she did her own chemo regimen (she had the same cancer I had the first time around, after I had it) so of course Dada was all in for me to be using ice. I told him I already had my compression socks on which I'd read helped and that I'm not sticking my feet in ice water for an hour when it is snowing outside and I'm already cold! I did hold a bag of ice for most of the hour of the Taxol drip, complaining a fair bit. He has pictures on his phone which I didn't get yet. Don't have to worry about the cold cap as I don't have any hair to rescue! Good thing, too, as I was wearing Grandmama's owl hat that Thing Three repeatedly stole when he was tiny... can't find that picture so I can ask "who wore it better?" I'll keep an eye out. He will win. 

I also showed her the dots on my head and hands that look like some of the moles I'd already had and asked if they were chemo related. She said, "you tan really well, don't you?" I answered yes and she told us that it's just pigment changes, chemo related indeed, and that her Black patients notice it as very evident on the palms of their hands. I'm pretty sure she said it will fade when treatment finishes, but as it isn't itchy or sore, it's not bothering me. Thing One made cracks about them being age spots cuz I'm old, heh!

It is to get even colder next week so be careful and safe out there, everyone. So much awful happening all around, so mind the reminder from the mother of the incredible Mr. Rogers: "look for the helpers. There will always be hard things happening, but there will always be helpers." Especially in this time of awful house fires both locally and in California, look around and see how you can help. Could be an excellently meaningful Valentine's gift to someone who already has everything. Yes, I know that is NEXT month, but those of us whose love language is NOT gifts need time to prepare ourselves. 

Take care, everybody!

 

Let's talk about sex

Yes, I did just open that can of worms. I suppose it's obvious that Reader Discretion would be advised.

But since some of you sang that title instead of reading it (hopefully not my parents*- hi guys!), here's the link to the song: Salt-N-Pepa, your blast from the past I claim no credit for any of it, but kudos to the group, the producer(s), the record label for airing it. If you watch the video and meander through the comments, you'll notice that the song is from 1991. I was in high school when it came out, Ryan White had already lived and died, "Hook" and "The Silence of the Lambs" and "Father of the Bride" were released, the Pens won their first Stanley Cup, lives were being lost in the Gulf War, Magic Johnson revealed his HIV diagnosis, Terry Anderson was released from seven years as a hostage in Lebanon, and the Cold War ended...

Is it just me or does that feel like a lifetime ago? It is astounding to me how much happens that I forget completely about. You guys, that was all before the Y2K panic. Before everyone and their mother (hi Mommee!) had cell phones. 

Here I am, older and hopefully wiser, but some things are slow to change. We know that sex sells and we are continuously bombarded by advertisers using it to their products' advantage. Sexy is big business. Why else would everyone know about the Kardashians?

I'm going to switch gears a little bit here as I'm attempting to use this blog sometimes as a teaching tool. Quick exercise time, think fast: what are the obvious aspects everyone thinks of when you hear chemotherapy?

*imagine the theme from "Jeopardy" playing here*

Let me guess. You came up with nausea/vomiting, hair loss, and fatigue. All very real. Other unfortunate side effects can be diarrhea (which, even after way too many posts, I still can't spell without autocorrect), foods seeming to lose their flavors or flavors being over-enhanced, fuzzy thinking/chemo brain, in my case watery eyes, and today's topic: sex.

Because chemotherapy can cause sudden menopause. Didja know that? Like really sudden. Hormones made in the adrenal glands and ovaries are diminished by the chemo drugs. Obviously that would affect estrogen and progesterone in women, but women also make testosterone, which as we know is responsible for producing sexual desire and all that follows. (I have to be sensitive in wording because despite the Reader Beware header there are still some young ones reading so bear with me and read between the lines of your own experiences.)  When menopause happens naturally, these changes take place gradually. Chemically inducing menopause happens much more suddenly. In my case, I quit taking birth control pills in May, immediately had one last menstrual cycle and have had nothing since. Second exercise time, think fast: what side effects come to mind when I say "reduction of estrogen and progesterone"?

*cue the "Jeopardy" theme again*

Time's up. All the ladies probably rattled them off in one breath: mood changes, night sweats, hot flashes, and dryness in sensitive areas. 

I've been wading through an incredible book which my radiation oncology nurse Barb lent me. It's called Breast Cancer Treatment Handbook, 7th Edition by Judy C. Kneece, RN, OCN, and it's through the Covenant HealthCare and Breast Health Program. It is very user friendly and has the real nitty gritty. The honesty and the thoroughness is refreshing. 

Let's talk mood swings. Almost every one of you just rolled your eyes and thought, "PMS". Yes, it's a real thing. Here's the why: during a woman's normal cycle, estrogen and progesterone levels drop to allow menstruation. In other words, it's chemical and not something in our heads. And for cancer patients who undergo chemo, those hormone levels don't go back up. Yep, some of you just opened your eyes wide. This book says that essentially some people feel they're not handling having cancer well because their emotions are all over the map when the reality is that their hormones have basically all been flushed down the drain. We as women are used to them ramping back up again and evening things out, but with chemically induced menopause, "yeah, that ain't happenin'."

I think this is where the nugget of mental health needs to be inserted. The book goes on to say that this side effect of treatments is real and chemical based and hormone based and not in anyone's head. Talk to health care professionals about how they can help. Sometimes medication can be a helpful tool in your tool belt. How are you magically supposed to deal with something physical and chemical without help? You're not! There is no shame in taking meds if they help you live to be the best you! Plenty of us wear glasses so we can see. Meds for mental health are no different!

So what about the one-two punch of dropping testosterone levels and the fatigue, two desire-slayers? Let's talk about sex. That's what you need to do. Talk. "Be open with your partner" blah blah blah. Seriously, your partner may know you really well but they most likely aren't a mind reader. If you're having a hard time with finding the right words or getting them out once you've found them, try books. I've been inundated with books since my diagnosis. Honestly, some of them I haven't even opened because I've been so overwhelmed. Let me know if you want to borrow some! And online resources are invaluable as well. For instance, I belong to a Facebook group of ladies who have made the decision to forego reconstruction and stay flat. We talk about confidence, scars, finding clothes that flatter our new shapes (which is harder that you'd think, might I add), other people's opinions, all kinds of things. The support is amazing. You hear a lot about social media only showing the best of the 27 selfies you took, the perfect vacation, the fabulous dinner, but it is also an opportunity to have real, raw, honest conversations about just about anything! Get plugged in somewhere. Life's too crazy of an adventure to go it alone. And no, I'm not only talking to fellow cancer patients. If you'd like more discussion about mental health, check out Dooce because she writes very candidly about her own struggles. She's the real deal, so use her search bar to begin your hunt. 

Read, research, listen. And talk. To your medical team (that's why they're there), to your family, to your kids, to your partner, to your friends, to the Facebook nation, to yourself. Get it out. You're normal. There's plenty of space in the State of Hot Mess. You do you. The Southwest corner is mine.

If you're a friend or a family member of a patient, listen. Hug. Help. Don't take it personally if we melt down completely or if we don't. Hormones and drives are just like other personality aspects- they vary from person to person. If we're not dumping all over you, don't take it as a sign that we don't trust you with it. We may just have other outlets for channeling the mess like exercise, faith, journaling, art, crying in the shower, screaming into our pillow, all of the above or something else entirely. I still don't recommend crying in a hammock. If we do purposely or inadvertently drag you into our mess, it's your responsibility to talk to us, too; we're not mind readers and if our issues are overwhelming you, take a step back and let us know. Don't just ditch us, k? 

That also or even especially goes for the sex part. If you're experiencing dryness and have no idea which OTC product is safe to use, especially if you're worried about extra estrogen, start a conversation with your nurse. If you just can't bring yourself to talk about it, make a list of questions ahead of time and just hand it over to them. They can't help what they don't know about. Again, you have to tell them what the problem is or they can't help you fix it. After all, might as well get every penny out of the medical bills you're racking up, right? Same with low or no desire. Talk about it. They can point you in the right direction of where to look for suggestions if they themselves don't have any. They are your tribe, your team, and they're rooting for you. People are not meant to do life alone, so summon up your courage and start some conversations. To be very clear, if something hurts, don't just endure it, thinking that's just how it is or how it's supposed to be or that it's just you. That means you're going to continue to be in pain. You are your own best advocate, so step up and get whatever help you need. Knowing the holidays can be incredibly hard, why wait to make it a New Year's resolution when you can start on the road to feeling better right now?

Just because we may be seriously too tired and/or have little to no desire, does not mean that we don't still want and need hugs, affectionate touches, closeness. I am so incredibly blessed to have a husband that gets this. He is my most amazing support and I'm getting teary eyed just thinking about how hard he has it to be beside me but not able to wave a magic tool to fix me. Thank you, babe. I am well aware of how lucky and blessed I am. I love you eternally.

So put up that mistletoe, surprise your friends with a squeeze, and don't forget to smooch your sweetie! (Of course there is always a flip side; if you have germs, please don't share them! Cough into your sleeve, wash those hands, and stay home to get better instead of sharing the little buggers. Bleah!)

* Forgot all about my darn asterisk. I'm crossing my fingers that my parents don't remember the song or that I'd be singing it while doing the dishes back in the day (eek), but they can surprise me. Once while they were visiting, our family was playing the letter game with our Echo Dot and Alexa gave us the letter U and "musician." Without raising her head from her crossword puzzle, my mother chirped, "Usher." We all looked at each other, astounded, and my Dad quipped, "she is un-believable." I guess anything's possible!