Friday, August 28

Crazy Good Week

I love those. The kind of week that brings beautiful weather (that it's been in August is a double-bonus), good food (menu plan for the win!), and fun interactions with the kids (on top of, or in lieu of, the regular routine of "do you have this" and "did you do that" and "seriously, please just get up"...)

We're at about 85% on schooling. My goal for August was 50%, so W00t! I'm not sure what it will look like once we add Chemistry to the schedule and Latin's in full-swing, but we're about to find out. Every year, it's like we're new here. Some things don't change, and to some extent you do hit your stride and feel like you can say you're a veteran homeschooler. Some things, though, seem to morph and change each year and you're starting over. I may have seen two others through 7th grade, but this is JakeRabbit's first year as a 7th grader... SURPRISE!

Em and Jase have been prepared to hate everything. So far, they've loved all of it. We chose Memoria Press' Insects study for science -- they do nature study regularly, but I thought a few years of focused instruction on specifics within the animal and plant kingdoms would be beneficial. This way, we aren't always having to look up what we find - sometimes it's a nice treat to be out and about and be able to say, "Oh, look! I've found a such-and-such!" or "Ohhh, the whatsits are out!" Huge win. There's a certain boost a child gets from checking out a library book and discovering he already knows the terminology in it. Or from seeing an unidentified animal in a book and realizing he knows what it is (thank you, Google, for providing verification on that one - totally made his day!)

And last night was Shakespeare in the Park, up in Nashville. (It's actually running until mid-September -- if you can make it, you are in for a treat! Check it out at Nashville Shakes.) They're doing Henry V. We had a wonderful group of young men and fun parents. The whole evening was, as is normal for the Nashville Shakespeare Festival, top notch and magical.

Soon, we'll be back to ballroom dance, Jr. Master Gardener, classes and outings and fun. Plus, Fall is coming!!

Be encouraged!

Saturday, August 22


I stretched this morning -- I mean full-body, head to toes, the kind of stretch that leaves every muscle relaxed and happy  -- for the first time in three days. It was the most delicious thing. (I can't stretch on shot day or the day after, because of the tenderness in my bones. And for whatever reason, I don't think to get one big cat-stretch in the day before, to tide me over. That should go on my phone reminders.)

And that, pretty much, is all we've done this past week. The rest of the week looks like a poorly designed to-do list of a very boring person:

Monday - Chemo, tidy the house, read
Tuesday - Chemo, tidy the house while wondering aloud if we hadn't already done this, read
Wednesday - Shot, breakfast with a friend (total highlight, there!), return home to wonder rather loudly and pointedly if we hadn't JUST DONE THIS while we tidied. Again.
Thursday - slept, and moved very slowly when not sleeping
Friday - cleaned up from all the tidying that didn't happen Thursday

Perhaps a very boring person who lives with vandals.

Oh, and I think I fell asleep during a Chemistry video at some point.

So, yeah, the highlight of my day today was a big old stretch in which I didn't fall asleep mid-way or cringe in discomfort. It was a good day!

James is caught up on his school work. John is enjoying some gaming with friends. The littles are binge-watching YouTube instead of having video game time (I have no idea why, but that's what they picked). Zorak's going to pick up some Captain D's for dinner, and that means I get to punt tonight's plan to tomorrow afternoon! Win, win, win. What a fantastic day.

Be encouraged,

Monday, August 17

Chemo, Round 3

This week is my third round of chemo. Long day today, short day tomorrow (unless there are fluids, then it's another long 'un), and then a shot - once a month. And this is our halfway point.

It's crazy, because going into it, that's the scary part: the chemo. (Dear God, they're going to pump cytotoxic chemicals directly into my heart? :thud: ) In practice, the actual chemo treatment is pretty pleasant and mundane, and with the nausea and pain medications available, management of those symptoms is getting better and better. Most people at least get to the car before they get sick-sick. So, it's not perfected. But we are lucky and I haven't been sick. So, it's like a lousy date. Z comes with me, we bring our own food (because all the snacks on the crack cart are pretty much genetically engineered to feed your cancer and shut down your metabolism - seems like a poorly thought out plan for offerings), pull the curtains and watch movies.

The scary part is scheduling a mid-point scan to see if anything new has cropped up, or if the cancer is even responding to the therapy. I feel like I'm being required to play Russian roulette. Even if this chamber is empty, I know there's a bullet in one of them. It's only a question of when it'll come up. I will live with this gun to my head for the rest of my life, pulling the trigger in increasingly longer intervals. Trying to come to terms with that reality is probably the most challenging part of all of this. From what I understand, it's something other cancer survivors understand, so it's nice to know this isn't some psychosis seeping into my mind, stealing my joy. I'm joyful, and I'm thankful. But I did not want to play this game. It's a stupid game. Who knew the scary part would be inside my head, and that I would have to learn to accept it and find the beauty around it? If I can find the harmony and the beauty in this, I will have snatched the damned pebble and Z will have to quit referring to me as Grasshopper.

But one of the beauties found in unexpected places is in the treatment room. Everyone is kind. Everyone is friendly. Everyone is cheerful. I'm telling you, if you ever want to see the most determinedly positive group of people, check out a chemotherapy treatment room. Even the people who clearly must feel like hammered dog crap can pull it together enough to be polite and kind, to smile at a stranger, to joke with the nurses. There's a lot to be learned about the resilience of the spirit in that room. I am learning. This is how you roll with the punches, people. Dang. I am in awe.

I could sleep. They have warm blankets, and the therapy chairs recline. But I choose not to. Not because I'm anti-nap, but because mentally, I feel more engaged and participatory if I'm awake. (I'm a big fan of not being awake if you don't need to be - case in point, sedation dentistry - there's nothing I can do there, and any "help" I try to offer is going to get in the way and likely to get me hurt in the process. Knock me out, do your dental magic, and wake me when it's time for more Percocet. Beautiful system.) But during chemo, and especially with the Rituximab, they want to know how you're holding up, how you're feeling, what your status is. Every 30 minutes. I don't know about everyone else, but my groggy, just awoken from a nap state is not the most articulate state. I would marble-mouth some kind of answer about being fine before even doing a full mental system check (Am I fine? I don't know. I was asleep!) Then they'd hear me and Z laughing over some inside joke and the next thing I'd know, they'd be inquiring into my drinking habits. Just, net delta, I feel better about staying awake during chemo. (For now. Come November, I may be begging for a gurney in the lobby so I can get a head start on the napping. And I guess that's the key - you deal with it in the way that works best, and if you find your approach isn't serving you well or helping you out, then change your approach. This is your body, and your healing. Go with what you can. There's no judgment to be passed or received.)

And on that non-judgy note, some of you may have flicked your eyes to my comment about the crack cart and thought, "Uh-huh. No judging, huh?" Yes, that's right. Knowing what's crap to eat when you are in a diseased state, and calling it like it is is OK. Understanding that sometimes patients are so nauseous that they simply cannot choke down proteins or fats, or even stand to smell them, and that when you're in that spot, you get what calories you can keep down to avoid a state of starvation, is imperative. The two aren't mutually exclusive. You can know better and still have to make do. You can disagree with someone's choices and still support and love on them. And when it comes to nutrition, particularly in the US, it takes a darned determined individual to sort through the kickbacks and faulty science and fads to figure out what's what and what's going to kill you. I am not even certain I've got it figured out, and this is my Thing. It's what I do - nutrition therapy is my go-to. And I can still laughingly refer to the carb-riddled snack cart as the crack cart. Because peanut butter cups are my crack. I know whereof I speak, y'all. And for now, I can resist the crack and eat the healing foods. There may be pictures of me absconding with peanut butter cups in the 10# sack from Sam's by November. I get that.

So today, we had a date. And I have made him promise me that after this is done, and we've paid off all the bills, we will start going on legitimate dates. Dates that don't require pre-emptive Ibuprofen and Benadryl 30 minutes before arriving for our reservation. Dates that might permit me to wear a dress or dancing boots -- for a reason. And I have promised to do my best to be there when it comes. That's the deal.

Be encouraged,

Friday, August 14

The Last Hurrah of Summer

Every night, Em asks me a series of questions. It's her Bedtime Catechism. What day is tomorrow? What are we doing tomorrow? Do I have to get up early? What's the temperature supposed to be? Can I read in bed? (And by "read", she means "craft". We both know this.)

It makes her a little bit batty that starting in June, my response to the temperature question is, "hot". It's going to be hot from now until October. "But WHY can't you look it up?" Because it's August in the South, baby girl. It just depresses me to see the actual numbers. Just plan on Swelteringly, Wiltingly Hot, and if it happens to be only moderately hot, or perhaps not sweltering, well, that's like a special surprise. She remains unconvinced, but every afternoon she says, "Yeah, you were right. It's hot." I'm excited for the first forecast day in the 70's - not just because the 70's are pretty awesome after a hot summer, but to see her face when I have a legit answer.

The public schools are back in session this week. As of yesterday, all of our county schools were up and running. But the local water park stays open until today before switching to the weekends-only schedule to wrap up the season, so we went yesterday to enjoy having the place to ourselves - along with another hundred or so homeschoolers, which is a bit of a tradition. It's such a tight-knit community that we ran into someone we know at every spot we landed, and the kids met new friends, too. I love the non-traditional back to school photos (bad lighting, random pose, and all):

We're on the far side of this project for the older two. I can't quite grasp how that can be, and yet, there they are - taller than I am, learning to drive, branching out in amazing, fascinating, and sometimes terrifying ways... It reminds me to enjoy the bedtime litany and listening to books I don't care for, because it won't take much time at all before Em and Jase are taller than I am, learning to drive, and branching out...

Today, it's going to be moderately hot. What a pleasant surprise. Perhaps we should go enjoy one last hurrah...

Be encouraged,

Wednesday, August 12

It's not all Chemo and Hydration - Back to School!

We've been somewhat back to school for a week, now, mainly finishing up the tail end of Churchill's The New World, and savoring a few surprise read alouds, but also working on writing a bit. Not only did the last few weeks of our school year get de-railed by medical testing - and we need to do a little catching up - but half days allow us to make use of a trip to the water park or an afternoon on the river with friends, too, while the weather allows. I rather wish we could just do half days every day, year-round, but we're just not focused enough to make that a functional plan. (Half days would become quarter days, which would soon dwindle down to nothing but the occasional documentary... I know how we roll. It would be ugly by February.) But this is a nice start.

The high schoolers are covering American History and Literature this year. I'm stoked. They're pretty much along for the ride. (Not exactly thrilled or squealing with delight, but willing to see what's in store. I'm good with that.) They're also doing Chemistry. They've gone their separate ways in all the other subjects, so it's nice to come together for discussion and hands on work occasionally throughout the day.

Jakerabbit is doing AO Year 7. He's been waiting anxiously for this ever since the older boys did it and he would stop what he was doing to listen to snippets of reading aloud... until I'd realize that he wasn't working on his work and would chase him back to what he was working on. Some of it is just as exciting as he'd anticipated it would be. (Ivanhoe! Kim! Birth of Britain!) Some of it feels like a bit of a letdown. "But I already heard this." (Once and Future King... I hate that that one feels ruined for him. Of course, I try to put a positive spin on it by saying, "Yeah, I know, but now you can read it closely. Lucky you! Not many children get a second read of the meatier works." He's not buying that as an enthusiasm-building motivator. But what can I do? Our house is too small for everyone to have a soundproof booth to prevent educational spoilers.)

Em avoids reading anything, or having anything read to her, at all costs. Over the Summer, she has kept up a lovely nature journal, has taught herself to sew, to crochet, and to do origami, all in an effort to not have to delve into the world of the written word. She can read (which keeps me from despairing), she just doesn't like to. I imagine I'll spend a good portion of this year tracking her down.

Jase, meanwhile, is having to track me down these days. He'll read anything and everything, regardless of whether he's read it before, or whether it's worth reading. And he'll read it aloud for good measure. I love it. I do. I'm just looking forward to the day his taste improves a bit on the literature front.

We're significantly busier than I'd thought we'd be at this point, and it's all good stuff. There's nothing they're doing that's a waste of time, or not a good use of their time (and I'm including social activity in there, because they have amazing friends and good interactions). I'm perpetually a little bit surprised, though, that we have such busy days and weeks. In my head (and based on my own experience, which was not the same as theirs has been - intentionally so), by the time they were in high school, they'd be gone all the time, off with their friends, hardly ever around for dinner. Instead, either we're all off with a passel of friends in one large, unwieldy herd, or the friends are all piled on our couch. Not being involved in the local organized sports has saved dinner for us - hallelujah! That's definitely not a regret, for us.

And so begins another year. It doesn't look like I thought it would, but once again, it's still good.

Be encouraged,

Nailing It Down - the testing phase

When your doctor suspects cancer is at play, wrecking havoc in your body, there's a lot of uncertainty. One thing you can know for certain, though, is that you're in for a lot of tests. And enough blood draws to make you fret for your iron levels. You have to brace yourself, mentally, and decide that this isn't something being done TO you, but something you are actively engaged in to help YOU and your medical team get to the bottom of things. Bone up on what the tests are, what they're for, and what to expect. Ask questions. 

(Get yourself a little notebook immediately and start taking notes. Write down questions that hit you in the middle of the night. Write down details you come across in your own research that you'd like to bring up with your doctor. Write down what your doctor tells you. You may understand everything you read and all that's said in a meeting, but when you have two or three meetings in a day, plus errands, meals, research, and helping the kids with their school work, the information bleeds together and you'll find yourself at dinner assigning surgical plans to the radiologist and wondering why you forgot to ask about the port placement while you were at the phlebotomist. Not helpful. Even the sharpest minds need notes. This is not a sign of weakness. It's a signal of sanity. Spool up now.) 

Also, get a couple of books you can read while you wait in lobbies and visiting rooms. Take a water bottle and drink, drink, drink. (Unless a test requires you not to, obviously.)

My regular doc (sports med guy - absolutely awesome, and generally unflappable) jumped through flaming hoops to not use the word cancer. I'm sure he was concerned I'd whip out a bucket of chicken, start crying and eating, and he'd never get me out of that room. (I wouldn't have, but he may have previous experiences that made him leery.) So he sent me to a surgeon to find out for sure before breaking out the ugly words.

The surgeon wanted images. Ultrasound of the cervical (neck) lymph nodes, and hey, while you're there, let's do the axillary nodes, too. And a mammogram. And a full blood work up. You're not pregnant, are you? OK, good. 

Then biopsies. My surgeon opted not to do a punch biopsy because he said the results that come back from the lab are invariably, "Yes, it's lymphatic tissue. We can't tell anything more and need a larger sample." So we went straight for an excisional biopsy (where they remove a piece of tissue - in my case, a cluster of lymph nodes) so they can slice and stain and poke and prod to their heart's content without having to knock me out or poke me more than absolutely necessary. If they're doing it on the cervical nodes, expect to be put under for that.

And then, the scans start. PET scan. CT scan. MRI. These scans can show a visual representation of where the cancer is in your body. It gives you a better idea of how widespread it is, and what you're up against. Aside from the Redi-Cat liquid prep you'll need to drink (it tastes vaguely like disdain, and metallic faux chocolate), these are minimally invasive and mostly boring. The IV MRI contrast will make you feel like you may have just urinated on the table - you didn't (in case they don't warn you about that - the tech I had said that even though he warns people, most of them check reflexively anyway.) If you're claustrophobic, ask about OpenMRI. 

If you have an aversion to needles, consider taking up meditation. I'm sorry I don't have better advice on that front. (My inner child sits there with me, remembering the days when it took the doctor, two nurses, the receptionist, and my own mother to hold me down just to give me a shot. She thinks I've become a complacent wimp. But the nurses I've had during this procedure, had they known of my violent youthful tendencies, would have been quite proud of me. I bought myself a milkshake for being so brave. There are perks, even if you have to make them yourself.)

If you're very lucky (OK, not really, but if you need it and you can have it, then that is sort of lucky), you'll also have a bone marrow biopsy and a spinal tap, to check for involvement in your bone marrow and Central Nervous System. I'm fairly stout-hearted, for the most part, but reading about the bone marrow biopsy made me a bit queasy. When my oncologist offered to put me out for that one, I jumped on it and considered getting a kitten to name in her honor (we're well past child-bearing, or I'd have offered to name the next one after her). Some people go through it without general anesthesia and they are fine. To be honest, the after effects were significantly less traumatic than I'd expected, and it probably would have been fine to do it awake, but I'd hit my wall at this point and needed to *not* have to face something with a stiff upper lip for a moment. So, that was nice. The spinal tap is done while you're awake. I had a magnificent doctor do that. We had a good chat. He let me watch him work. He's most definitely in my top ten favorite doctors, and the spinal tap is probably in the top five Lease Offensive Procedures I've experienced. Your experience may vary, but if you can go into these tests with an attitude of cooperation and a sense that you are on a mission, this helps. These tests, if they're ordered, are helpful tools to give you a clearer view of the path ahead.

There may be other tests, but these are all I had done.

The blood draws are frequent and copious. God bless the inventor of the Vacutainer blood collection system. One stick, all the vials you need can be filled, and you're done. Granted, by the time you're done with this whole process, that's still a lot of sticks, but it's significantly fewer than it could have been. There will forever be a place in your heart for those who can do a painless blood draw.

All of this happens very quickly. It can feel overwhelming. It's OK to take a step back from all your researching and spooling up from time to time. The information will be there after a nap, or a coffee break with a friend. Just be sure to come back. 

Be encouraged,

Tuesday, August 11

At Least Now I Know Why!

The last time I blogged, all I could say was that I was overwhelmed. And I was. I'd adjusted everything I could adjust (eating really well, staying hydrated, working out four days a week, reading great books), and from November to January, I felt like I was maybe keeping up. Then... I just wasn't. I wasn't sick. I wasn't depressed. I was just overwhelmed and tired. My runs dropped from 3 miles and working on best time (which, in itself, is amazing, because even at my most active in my youth, I couldn't run a mile) to sucking it up go get 2 miles under my belt. I went from making mad progress on my weights to topping out at some embarrassingly low upper body numbers. What was wrong?

"Eh," I thought, "I've got five kids and too much to do. I'm still only marginally qualified for what I *am* doing, and let's be honest, I don't get enough sleep. That's probably it."

So we built a wall in our living room. I've got to tell you, that was kind of awesome. And we have a pocket door in the hallway, now, so we can stay up and watch movies without the children languishing in bed to the soundtrack of all the Fun they aren't having because we sent them to bed so we can party. (That's not really how it plays out, but that's how it feels when you're seven and you just KNOW Mom and Dad are watching the really good shows and eating the good ice cream without you.) Loving that pocket door. And the good ice cream. And although I still wasn't feeling 100%, I sucked it up enough to enjoy a really great visit with Z's Aunts, and get most of the new spaces painted before one afternoon when my lymph nodes swelled up like grapefruit and I just had to stop moving.

That's when we figured it out.

Why the long lead in? Because saying "cancer" sucks all the oxygen out of the room. And that's what it was. Is. Turned out to be. Whatever. Time is a bit fluid. Cancer.

Fortunately, I have a very lethargic cancer. It's slow-moving and not very aggressive. We call it Slacker Cancer (the doctors call it Follicular Non-Hodgkin Lymphoma). That was the good news. The bad news was that it's absolutely everywhere. It's in all the lymph node clusters, in my bone marrow, and there are bulky bits in my chest, lungs, and abdomen. There are masses pressing on my arteries and colon.

More good news: it's not in my brain. (By the time we got that bit, it was the first good news I'd had in months, so I'm particularly attached to that one.)

How did it get everywhere? Because I put things off, discount when I don't feel well, compartmentalize anything that falls outside the parameters I can function in. I'd tweak my diet, double down on hydration, do better about getting rest (at least for a bit - I'm terrible about going to bed at a decent time). And I'd feel better. It was only in the last year or so that I haven't been able to squeeze the processes to get maximum output anymore. So, don't do that. I mean, obviously, if you can tweak your behaviors to put you in a healthier, stronger position, PLEASE DO - we credit at least some of how well therapy is going with the kick ass condition of the rest of my body going into this - BUT don't discount that something may have gone awry within your body. If you're not feeling well, talk to someone. Get checked. Have an accountability team. Make sure your doctor is a part of your team. Ask questions and educate yourself. Seriously, be your own advocate and go get yourself the kind of care you work so hard to provide for the people you love.

I'm halfway through a six-month chemotherapy plan. (Third round coming up, anyway.) It's going very well - at least from a side effect standpoint. I haven't had more scans done, so for all I know, I'm taking bags of saline every week and we're not even touching the cancer. (Not really. I trust that we're knocking it out. But we won't know until we re-check and see what's what at the end of that.) There may be radiation, or we could be done. We don't know. My doc was thinking we'd wait and watch it for a year or two, based on how healthy I am in all other respects, and was downright shocked when we got the scans done and saw how widespread it is. We've got to be flexible and ready for whatever comes. Of course, we're all pulling for that to be the end of it.

Interestingly, it turns out there is no "cure". You're never done with this stuff. It will come back, and the focal point of all treatment is "when" - how long can we beat it back. So, yeah, that'll be fun. Also? A good oncologist is worth several healthy kidneys on the black market. Find one who will be your partner and your MVP on your cancer-kicking team. Seriously. I pray you never need to take that advice, but if you do, you'll thank me.

I hesitated to blog about this. It's awkward enough having to tell people in real life. To be honest, it feels awkward seeing how very much the people in our lives love us (it's a GOOD problem to have - I'm not complaining, but I am significantly uncomfortable being on the receiving end of help - and thankful to be in a position that I know that, now). I didn't want it to take over this blog that's supposed to be about our adventures (the ones we wanted to have!) But when I first received my diagnosis, I looked for blogs about this. The first three I found ended with a final post about funeral services for the author. Gah! No! What? (*escape-escape-escape!*) This is not my plan! (*click-search-click*) Who else has blogged about this? (*clickety, click, click*) WHY HAVEN'T MORE PEOPLE BLOGGED ABOUT THIS? I did find a couple of blogs that were very helpful. There's that isolated period where you have your diagnosis but you're not ready to talk about it (don't even know quite what to say, or what there is to learn about it), and yet, you want to connect with someone - anyone - who has been there. Something to help take away the Unknown Factor from some of it. So I will blog and pay it forward. The next few posts will be repeat information for anyone who also knows me on Facebook and is in the group we set up, but hopefully they'll be encouraging for anyone who finds themselves waiting for a call on a biopsy at some point...

Be encouraged,