Thursday, January 25, 2018

Life with 5p- Lately

How about something not related to chemo or cancer?

Life with 5p- syndrome...lately. Olivia turned eleven back in November. She's in fourth grade, mostly integrated into the mainstream classroom but pulled out for math because, duh, math is hard.

She's sleeping great these days. I can take her to her room, tuck her into her bed, kiss her goodnight, tell her I'll be back in a few minutes, leave the room and come back twenty minutes later to find her sound asleep. Can you even imagine? A couple of years ago I couldn't have. And here we are.

At the beginning of the year, she was coming home with 45 minutes to an hour's worth of homework every single school night. Today, we spend ten minutes on her homework. That included spelling and math. The difference is amazing.

She started getting pulled out for math back in September (right around the time of my surgery) and it's been amazing. Her new teacher is even trying different strategies to help her learn multiplication and division. At our last face to face meeting, though, we agreed that as long as Liv can master addition and subtraction to the point of being able to tell if someone is giving her the correct change, we'll be happy with her math education. We all know that we ALL walk around with calculators these days, so is multiplication/division really THAT important? Okay, maybe so, but perhaps not so much for Olivia.

Behaviors...well, she can have some attention issues. A lot of her reports from school are that she starts slow but builds up her endurance and almost always finishes her tasks by the end of the day. She has some stimming behaviors that we just deal with. She has to hope before she can sit down. She flaps her hands when she's nervous or when she's switching tasks.

Maybe the biggest thing is that she's a little (a lot!!) spoiled. She loves being the baby of the family. She's very indulged and, well, a little (probably a lot) lazy. She CAN totally feed herself and yet, she doesn't want to. Her hands work perfectly well, she can write quite legibly these days. But she'd much prefer to have someone shovel food into her mouth than to do it herself.

She's the baby of the family, she's quite charming and it's easy to baby her. And yet, I often remind her, she's ELEVEN. She has hands that work. She can lift a spoon to her own mouth. She fights this so much. It's an ongoing battle. She never reached that two year old stage where she insists, "I can do it myself."

She does like to remind us often, though, that she's not a baby. I like to retort, "Prove it, pick up the spoon and feed yourself that cereal."

She always just rolls her eyes and says with disgust, "Mom!"

What are you going to do?

Tuesday, January 23, 2018

Symptom Spotting

One of the biggest stressors of chemo (you know, other than the fact that they're pumping poison directly into your veins) is the list of possible side effects.

Here's a list of the possible side effects of Taxol:
•Low blood counts. ...
•Hair loss.
•Arthralgias and myalgias, pain in the joints and muscles. ...
•Peripheral neuropathy (numbness and tingling of the hands and feet)
•Nausea and vomiting (usually mild)
•Mouth sores.

Each week, especially after the first couple of days after treatment (so, like, Wednesday, Thursday, and yes, even Friday) I sit around and obsess about every single thing I feel.

Just a few days ago, I started getting a little numbness in my toes. It was sporadic, didn't last long but it the start of peripheral neuropathy? Will is spread, start lasting longer, become irreversible? Should I call the cancer center the instant I first feel it? (Don't worry, I mentioned it today to the nurse practitioner. She said to keep an eye on it, maybe note when it happens in a journal and mention it to the doctor if it seems to be getting worse, lasting longer.)

But sometimes, maybe I've just sat in the recliner too long and that's why my foot is asleep. Last night, I slept on my hand and woke up with it completely numb. I knew, logically, it had nothing to do with the chemo, but I wondered if maybe I'd made it possible for neuropathy to take effect because I'd sleep on my hand. Of course the feeling came back like it always does when you get your chunkalunk body off your poor hand.

Today when I got home from chemo, my stomach hurt. Was it because of the chemo or did the chicken BLT I had at Cracker Barrel just not agree with me? Who knows? The end result of that stomach ache was not pretty, but again, who knows what actually, REALLY caused it? After using the bathroom (twice) I felt better.

My hair...Olivia still adores my bald head. She has asked more times than I can count why my head it white. I answer her each time with the fact that last summer, I had hair. This winter, my head isn't seeing the sun thanks to the hats I wear. That's why my head is white.

We buzzed my hair back in October. There is still quite a bit of stubble there but it shows no signs of actual growth. It's still about a quarter of an inch. So, no more real loss but definitely no growth. I didn't expect it to grow back but I still watch for it. Six more week of chemo, then the hair watch will truly begin.

Mouth sores...well, let's see. I don't have any actual open wounds but my tongue hurts. There's a spot on the back, bottom left side of my tongue that pretty much hurts all the time. It's gross. My mouth is in a constant state of dryness. I have to drink water all the time to keep it moist (ick) and that just makes me pee every half hour. I brush my teeth several times a day and use Act rinse at the advice of my dentist to protect my teeth from the dry-mouth. I'm so tired of this one and I'm pretty sure it's all chemo related. There really aren't a lot of other reasons for my mouth to be REALLY dry.

Oh yes, wait, there's one that's not actually mentioned in the above list. Bloody snot. So flipping gross.

I wake up each morning with a very stuffy nose. But I can blow the stuffiness away. The ick factor is that the snot is bloody. Then, after I get the snot out, I have to keep blowing because (look away, WARNING, GROSS DETAILS AHEAD...YOU HAVE BEEN WARNED)there are basically what looks like bloody boogers that need to come out.

I've mentioned this to two of my chemo nurses and both of them recommend a humidifier in my room. Okay, fine. I'll get a stupid filter for my stupid humidifier this coming weekend and see if it happens. Never fear, I WILL update you on the state of my bloody snot. I'm most excellent at over-sharing, if you haven't noticed.

Then we have the normal aches and pains. My neck often hurts. Is it because of the chemo or because I played three hours of Candy Crush and Pet Rescue while lying in bed last night? Is it because the chemo causes aches and pains or because I'm not moving enough, getting exercise and sunshine instead of settling down on the recliner with three blankets on my and watching season three of Black Mirror?

I'm also cold most of the time. Is this a chemo thing or just the fact that's January and January is a stupid month (other than being Alyssa's and Mitch's birth month, which makes it an AWESOME month) except it actually kind of sucks because it's so damned cold outside and gray and the snow that was once so glitter and pretty is now just brown and gross.

And there we have it...all the symptoms I'm experiencing that could possibly be chemo related but also have other, perfectly ordinary, non-chemo possible explanations.

It's enough to drive the sanest person crazy.

Monday, January 22, 2018

One Month

Last Friday was the one month anniversary of me starting full-time medical leave. How has it been?

Yeah. I've rested a lot. Which basically means I'm super lazy. We already knew that. I've confessed to it over the years. I am not good with leisure time because I get nothing done. If I'm busy, I know I have to do what needs to be done now because it won't get done later. But if I have nothing to do, nothing gets done.

I didn't have a job the first semester of my freshman year. I got Bs and Cs that semester. I just couldn't get the studying and homework done. I was horrible. I had all the time in the world so I didn't do anything, ever.

The second semester of my freshman year, I got a part time job at the cafeteria of my residence hall. My grades came up, I wasn't nearly a frazzled trying to find time to study and do homework. I was busy, so everything fell into place. Weird? Probably not.

Honestly, I think we're all sort of weird but no one is probably as weird as they think they are.

I have made a tiny bit of progress in the toy room. I've also cleaned out a box that was cluttering up the floor of our bedroom. I've taken three big bags of clothes to a donation drop box. I'm taking three bags of old, crappy, broken toys to the dumpster this afternoon after Liv gets home.

I've also gone to five chemo sessions, so there's always that.

I kind of like not working but I don't think it's good for me. I could get used to being slovenly but that's probably not something to aspire to.

Thursday, January 18, 2018

Week In, Week Out

I'm not doing well at this whole being home and still blogging thing, am I? Sorry about that. I think I get tired of talking about chemo and cancer and there's just so much sleeping (or not sleeping) to do.

On the topic of chemo, Taxol is definitely easier than the first stuff I was one. But the biggest side effect, for me, of the whole Taxol process is the steroid insomnia that kicks in on Tuesday night. This week, I slept not at all on Tuesday night. Literally, not at all. I laid in bed for maybe twenty minutes, read for bit, got up and cleaned some of the clutter in the toy room, read a little more, and just...didn't sleep.

I took a three hour nap yesterday (Wednesday) and plowed through the day.

It appears I'm much more of a morning person when morning just kind of happens without me sleeping. I was quite cheerful yesterday, without the annoying sound of the alarm waking me up than I was this morning after eight-ish hours of sleep and being woken by the alarm.

So far in the time I've been home, the girls have had not even one full week of school. I'm not sure how I feel about that. I mean, sure, it's great when they're around but then I feel a bit guilty about sleeping when they're here and awake. But I'm tired from both the chemo and the insomnia so I sleep and then feel bad and then don't sleep when they're sleeping and it's a vicious cycle.

I'm still playing the go-between for Tom and Alyssa. Ugh. Those two...

Alyssa turned fifteen last Sunday. We had a birthday party for her. Because she's now so busy with pep band, play practice, solo and ensemble sessions, we didn't have a slumber party for her. This was much to Tom's delight. He never enjoyed having six or seven girls over for the night. But Alyssa loved it so much and so it was a bit of a battle this year between them. I understand both side. She only has one birthday a year, she wants to celebrate it with her friends. She has a lot of friends and never wants any of them to feel left out.

He hates company, period. But having that many people in the house for that long really bothers him. I'm not a big fan of company and the older these friends get, the bigger they all get and it is a lot of people.

In the end, with Lyss's schedule, it made more sense to have an afternoon party (noon to six!) on Sunday. It worked. They didn't stay the night, they still had fun, there was a very clear end in sight for Tom. I'm not sure anyone was exactly happy with it but the compromise worked.

This morning there was a little more chaos as they fought of cereal. I know! It's so stupid. It was the case of the mixed cereal. Alyssa hates it when he mixes cereals. For example, we have Lucky Charms and Froot Loops. Tom has been known to put some of each into a bowl and expect the girls to eat them. Olivia does so without complaint. Alyssa declares it gross.

This morning she stood at the counter and tried to pick the Froot Loops out of her Lucky Charms. He told her if she did that, tomorrow she'd only get Froot Loops. She got mad, wondering why he'd make such a declaration. She prefers Lucky Charms to Froot Loops and honestly, if you're going to let your kid eat either one, what difference does it make which one she chooses? They're both laden with sugar and pretty much NOT nutritious, right? I think one of them (I won't name names) just likes to make declarations because he/she can and expects them to be followed.

It's frustrating.

Finally, trying to defuse the situation so she could just eat her stupid cereal. I said gently, "I wouldn't want to eat mixed cereal."


Once I'd given my opinion, apparently, I'd taken sides and one of them was mad.

But, Alyssa was happy because she got her bowl of Lucky Charms only and that made even the snarky comments coming from the other side of the room worth it.

I don't know. I hate it when they do that.

I also kind of hate arbitrary rules made simply because someone feels they CAN make rules. So there's that.

Yep, it feels like each week is just blending into the next. I start to feel really good on Sundays, knowing that Tuesday is right around the corner.

I probably need to find a job sooner than later.

Monday, January 8, 2018

Chemo Chronicals - Take...I Don't Even Know

Last week I had my third infusion of Taxol. The first two weeks were okay. I was tired from the Benadryl both times and slept for about two hours after getting home from the chemo appointment.

I think I've had a bit of steroid insomnia on the first couple of nights after receiving Taxol. I receive a steroid and Benadryl to help stave off allergic reactions to the Taxol. By Wednesday evenings (after receiving Taxol on Tuesday) I get a weird red spot on my right cheek. I take a dose of Benadryl and it goes away. So...yeah.

My intestines seem to tolerate the Taxol better than they did the cocktail of chemo from the first eight weeks. That's my polite way of saying my poop is more normal these days. Not so much constipation followed by diarrhea. That's always a plus.

This week it's taken much longer to bounce back. I've been very tired and achy for days and days. Poor me.

I cried yesterday, much to Tom's dismay. He didn't know what to do. I told him to just let me cry and I'd be okay. He held me for quite a while, which was sweet. I'm not even really sure what brought on the tears. There's a bit of stress in our house as Alyssa's birthday looms and she wants a big slumber party and Tom is adamantly against it. I'm feeling very much torn between them. And I don't like that. I don't want to be in the middle. But I understand both sides and that makes them both come to me with their frustrations with each other.

Anyway, the tears subsided and I was fine.

My mouth hurts this time. It feels like there are a couple of sore spots. I've rinsed with warm salt water (suggested by several of the books/pamphlets given to me by my chemo nurses.) I'm not sure it's helped but I know it hasn't hurt. It's just so weird to have my stupid tongue hurt.

I got the call from the nurse today that my labs look good so we're on for chemo tomorrow. Wheee!!

I feel lucky that I get to recuperate at home. These weird aches and pains and bouts of sadness crop up with little warning and so being at home where I can snuggle under a blanket when I need to do so helps so much.

Each day is one day closer to being done. I'm holding on to that. I didn't get much done around the house this week but...well, I'm getting out of bed every day. I count that as a positive.

Wednesday, January 3, 2018

No Resolutions

There will be no resolutions for 2018, at least not for me. Tom's resolved to eat less bread. I know. Whatever.

I've decided that getting through chemotherapy, finding a new job, organizing my house at least a little, well, that's enough. And I'm even making resolutions to do those things. I can't resolve to get through chemo. It'll just happen because, well, it has to. I also have to find a new job come March/April, so there's that.

The organization of the house...since I'm home with time on my hands, well, it'll happen, though probably slowly. Wait, maybe not!! I've already organized the coat tree/backpack/shoe drop area by the garage door. I packed about seventy-two pairs of Alyssa's shoes and one pair of Olivia's in a basket and deposited them in the girls' rooms this morning. I also took all the extra coats (three for Alyssa) and jackets (thirty-six for Olivia) to their respective rooms as well. Why do two children have SO MANY pairs of shoes (Alyssa!) and jackets (Olivia!) It's winter. I left both of their boots by the back door as well as left plenty of room for the coats they currently have with them at school to be hung on the tree. Now that the extra coats and jackets are off the tree, it looks much more like a tree bare of it's leaves in the winter. Ha, look me and my simile.

But the whole act of making resolutions this year feels like too much. Give up caffeine? Are you insane? Maybe when chemo is done, sure. But right now? No freaking way.

Watch what I eat? Why? I get scolded for losing a single pound from week to week by the nurses at chemo. There will be no watching calories or junk food, thank you very much. On the bright side...(I guess) I was exactly the same weight this week as I was last week. In my opinion, that same weight is TOO MUCH weight but whatever. I'll deal with that later too.

I guess I could resolve to take more baths. I do love a hot bath. But I'm currently taking probably four to five baths a week (and showering most days, so yeah, bathing twice a day quite often) so that's just silly.

I could try and be nicer to my husband and children but when you have a handy excuse as chemo brain, well, who am I not to take advantage of that? Not a saint, that's who.

So here's to 2018. The year without resolutions.