Infusion #3 - The One Where I Was Really Tired

 A friend who unfortunately has already gone down this chemotherapy road described it as a roller coaster and SHE IS CORRECT. Fluctuating between good weeks and bad weeks, counting down the days. 

 I'm lucky (ha! lucky) enough to have infusions every other week, giving my body time to rebound. The problem with that is I get a little taste of good health before willingly putting myself back into the chemo chair to do it all over again. The effects are cumulative - so I believe I've passed the honeymoon phase of relative good energy and spirits. Everything hit harder this time. The fatigue. The nausea. The languid manner. The really gross sweet metallic aftertastes. I came home from treatment last Monday and was probably a bit of a mess. I left water running in the bathroom after washing my hands, threw my coat on the floor, probably threw a few other things and went straight to bed. Luckily with the meal train - I woke up to eat dinner and lasted about an hour before needing to go back to bed. 

 It could be worse, I know - but mentally, it's difficult for me to just "let it be" and wait it out. It's not normal for me to watch movies in the middle of the afternoon. I've let Finian spend many hours on Roblox this week. I have an unfinished sewing project, a quilt top that is practically taunting me... "Come on, just a few more rows and I could be finished!" 

 Gifts and cards have been rolling in at alarming speed and I am so grateful. I do tend to put myself on an island when life is less than ideal - and it means everything to me that while the world is moving at full speed, so many friends have taken the time to write a note or pick out some pretty epic pick-me-ups when I'm laying on the couch like a bum. 

 And to round out this update: let me share my movie reviews from the films I've watched at odd hours of the day. 

Whitney Houston : I Wanna Dance With Somebody - 7 out of 10. Mostly because it's hard to dislike reliving songs that you played on the jukebox at Pizza Hut in 1988. 

The Whale - oh my god, 2 out of 10. I know it's an adaptation of a play, so that must explain some of the melodrama but I couldn't get past it. Kudos for makeup, etc etc, but no thanks. 

I switched to Queer Eye after the long movies and as always, 10 out of 10. 

And in Delphine's World

Most of you know that Delphine had the most dramatic entrance to the world, out of all our children. Her bathtub debut is a story we love to re-tell to her, and she's grasping more and more of it as she gets older. "You mean babies come out of WHERE"? :)

She's been a great motivator and truth teller in the past couple of months - as all seems to be moving along wonderfully in her 6 year old world. First birthday parties with friends, attending a Q & U wedding in her kindergarten classroom, learning Tiktok dances and learning to read! 

We have a wide array of ages in our household, so the sweetness of this age is not lost on us. She's willing to tag along to stores or watch movies or comfort me and say "I wish you never had the cancer." Me too, girlfriend. 

Here are a few photos to share all of the excitement of being 6! Including the first lost tooth (which we think either went down the sink with toothpaste or was swallowed. We'll never know!) 

Reading to me while I relax on the couch

Enjoying the karaoke machine while in Tennessee

Because everyone takes a selfie (or a DELPHIE!) after a long day at Dollywood

What I tend to find on my phone every time it is left unattended

First lost tooth!!!

With curled hair, ready for a night at the movies. 

Dose #2 - The One Where Your Hair Falls Out

Dose #2 was on Monday the 10th (Easter Monday -yippee!)

Let me just begin this post with a big thank you for (1) coming here to read my musings. I'm not under any illusion that my "health journey" is a riveting account of adventure. And (2) for all that are checking in via text and messages during this treatment. It makes me feel like I'm still a part of this world as I lay on the couch or stare at the pages of a book... when I'd rather be keeping busy. 

Everyone who has been through chemo has said that we'll fall into a rhythm of sorts. You'll begin to know which day has the worst side effects and how to manage them. The anti-nausea meds are prescribed for days 2-4 and day 5 has been pretty intimidating to me. Why don't I get days 5,6,7,8 and so on? I have plenty to take AS NEEDED and I've felt like they've been needed. The good news is they work. 

I went to my Tuesday acupuncture appointment and am taking a CBD oil to ward off nausea and neuropathy. I added a medical grade drink called Enterade to my regime and I think it's helped a lot with stomach cramping. Other than that, we are just eating the amazingly good food our meal train has provided. We know a lot of amazing cooks and generous friends. There's no lacking in carbohydrates here. 

The big news is that my hair fell out basically overnight. 

I don't know why the big "shed" occurs around day 14-20 after chemotherapy begins, but it happened right on schedule. 

I've been following the comments in several breast cancer Facebook groups - some specifically for cold capping, which is a huge reason why I chose NOT to invest $1800 in a contraption that only had a 50% chance of working. I read a lot of comments from women that were heartbroken that their hair was still coming out in huge clumps and the MAINTENANCE. Ugghhh. You can only wash your remaining hair 1-2 times per week, brush it extremely gently, avoid swimming, avoid blow drying, avoid hair products, etc etc. Pretty much avoid all joy and ease to your life. (At least that's my take on it). The science behind it is extremely interesting, just not what I'm looking for on top of dealing with the other physical discomfort of chemotherapy. I know I didn't want to devote another 2 hours in the hospital each infusion, freezing my scalp and then being so intimidated by what's left in my scalp to sleep soundly. 

Hence, my decision to accept that my hair IS going to fall out. I didn't want to prolong the heartache. By Thursday of this week, it was getting pretty patchy. If I kept it in a ponytail, I could manage but by Friday morning - it was time! Gregory, and our Covid-era hair clippers, had the hard job of giving me a buzz cut. I was afraid that I'd hate my reflection, but so far - I'm less traumatized than I expected. 

Finian refused to look at me initially and today he still didn't exactly have encouraging words... but living with him, one needs a thick skin anyways. Poor Delphine cried at first, even though we've read several books about this. But by the time we were ready to go to the movies (because there's no hiding in the house for me!), she was ready to see me try out one of the several wigs I've purchased. 

I could go in-depth with my family history of baldness (it happens early to the Stantons) , how I got my new haircut on the anniversary of my father's passing (and his bald head). I could make jokes and talk about how it's going to be fun to try new scarves and silk-lined hats. When in reality, it's just going to continue to be weird. Weird, but ok. I have support, I have the resources to try ways to venture out in public. This is all just a surreal experience. 

I'll end this post with some photos of the extremely thoughtful items friends sent or dropped off this week. I'm honestly excited about the prospect of all the thank you notes I get to write! 

 

Finian Turns 4

Who is this pint sized Michael Myers? Why, it's Finian! 

We can't really explain *when* the obsession started... But first it was the Halloween music (which he requests on Alexa all of the time, "Alexa, play Michael Myers by John Carpenter), then silly YouTube videos of people dancing in their Michael Myers costumes. But it's an obsession now. We got him the mask for his birthday and our good friends supplied the coveralls. Obviously he's been wearing it every day since his birthday on Sunday. 

   This kid is a unique one! His birthday fell on Easter this year - and will happen again in 2034 and then again in 2045. 

We celebrated with cupcakes and his presents. 

There's a lot to say about this little guy. Being less than a year old when the COVID shutdown occurred - he's our only child to fight going to school and fight us on nearly everything else! He is, umm, spirited. For the last two years, he's come with me to the home school collective where I teach sewing two days a week and gets to spend time in the nursery with Grandma Sally. She is a miracle worker and has worked through his tears and tantrums. 

So Happy 4th Birthday to you, Finian. I hope you never lose your fierce convictions, but find a way to wrangle the strong emotions in that little body. You are full of love and sweetness, too. 

Fresh Mountain Air (& Gatlinburg)

This trip to sit in a cabin, overlooking a piece of the Great Smokey Mountains has been planned since last fall. My in-laws, in all of their wisdom, have been gifting us experiences instead of physical presents in the past several years. We've been so lucky to get a week away together in beautiful places like the 1000 Islands and now Gatlinburg! 

I'm also fortunate that my medical team was supportive of starting chemo at the right time, so that in my off week, we could travel. Because DOLLYWOOD.  

 

We realized right away that the town of Gatlinburg is... ummm.. a lot. Very very touristy and very very crowded. And very spring break. Driving through and looking at the arcades, Bubba Gump shrimp, Ripley's believe it or not, Old Timey photos - people watching at its prime! We did indulge in one mountain coaster ride, one hot day at Dollywood and had a lovely meal in a steakhouse our last night. 

Oh, the shame!

I've spent a lot of time thinking about what kind of patient I am - and what kind I'd like to be. I've always been stoic about pain. And private. 

There's a certain amount of shame in being sick or injuring yourself. Shame, disbelief and in my personal experience, trying to "fix" it myself. 

Once, at church day camp when I was probably nine years old, my big toe was busted open by a heavy metal door opened at the wrong time. I was barefoot and everyone knows that feeling of stubbing a toe. Every time it feels like your toe has literally fallen off. I remember shaking my foot and thinking "Oh my GOD that hurts"... and then looking down to see the blood. I didn't cry or run to an adult - I hobbled upstairs to the bathroom to rinse it off. The adult counselors found me by following the trail of blood. 

(In the end, I did need to go to the emergency room to release trapped blood under my toenail and fix the skin that had been torn. Pretty gross.)

Right before seventh grade, I fell off a neighbor's scooter and bent my left elbow the wrong way. I remember waking up on the ground and my father winded from running down the street to pick me up.  My joint was already swelling up to the size of a grapefruit and needed smelling salts to stay awake. Also, pretty gross! 

In the emergency room, I remember two different doctors giving two different opinions. First doctor said I would need a pin put in my elbow to fix the fracture. That caused immediate tears and panic. The second doctor said, "Let's put it in a cast. Should heal just fine". Now, that was exactly what I wanted to hear. We DID put my arm in a cast -- which then led to unsuccessful physical therapy, a surgery to put a pin in place 6 months later and another 3 months in a cast. The harder option initially had been the right call. Would have saved us months of rehabilitation and probably a few thousand dollars for my parents as well. 

This is how I've felt about the doctor's decision to recommend chemotherapy. I felt like my 13 year old self...wishing the doctor would tell me it would be a simple fix. Just put a cast on it (or in cancer terms, let's surgically cut it out!). Not that surgery is an easy way out - but literally no one on the planet would be relieved to hear that chemotherapy is the recommended treatment plan. So I am reminding myself that what's shitty in the short term might just be the best option for long term health and healing. 

As for the emotional elements of health, I don't know if it's my private demeanor or conditioning to be a *good* patient. I'd love to deliver good news to every person that asks how I am feeling. It's like being asked, "How are you?" and wondering whether you give the truthful answer, or the answer everyone would like to hear. I was actually embarrassed to report (1) that I have cancer and (2) that is had spread to my lymph nodes. It still feels like a personal failure. 

I started 2023 by reading some really incredible books. One was Daring Greatly by Brene Brown. It focuses on shame and how our behavior is SO influenced by it. I've had to get over a few ideas I had about health and image and how to be honest with myself and others. Do I feel shame in the fact that my body has created these tumors and no amount of exercise, good practices and nutrition stopped it? Absolutely. Do I think of a curated, "good vibes only" response when I'm asked how I'm feeling? Yup. Do I still think of myself, my self image, as a "healthy" person? I do. All of this conflicts with the inner and outer self. 

What DOES make me feel better is that for whatever reason, my brain always conjurs the image of Pumba when I think of shame as a concept. I hear, 

" And oh, the shame

(He was ashamed!)
Thought of changin' my name
(Oh, what's in a name?)
And I got downhearted
(How did you feel?)
Every time that I-
Pumbaa! Not in front of the kids!
Oh... sorry

Hakuna Matata!

Not much has changed since I was 13.