Showing posts with label medical adventures. Show all posts
Showing posts with label medical adventures. Show all posts

Sunday, February 5

I wish I'd gone into research

I was never good at taking notes, and when I did, I'd often lose them. The running joke in our house, as we search for yet another list I've misplaced, is that this is why I never went into research. But after educating children, having cancer, and refurbishing a house, I wish I had. It would be nice to have volumes of well-tended notes to refer back to, to see if there are new patterns or untapped ideas.

This morning, over sad coffee, I read through the recent posts in a Keto group I'm a member of. (This group is scientifically oriented, and is based on the work of Drs. Phinney and Volek.) The NSV (non-scale victories) are amazing -- off of blood pressure medication, off of insulin, off of statins, off of anxiety medications, no longer categorized as diabetic/pre-diabetic... the list really does go on and on. Daily. The weight stabilization (both gaining and losing, to find optimal) is impressive. Every day, people are getting their lives back, and the healing that's happening in this group comes straight from the learning, growing, and taking control that the members are engaging in to save their own lives. It's my morning read, and is such a place of encouragement for me.

And yet, weekly, I also read stories of doctors who (essentially) won't take notes. They acknowledge that their patients are improving in ways they hadn't expected, but they won't acknowledge or record what their patients are doing differently to see such drastic results. (I have, personally, had the same experience with my new oncologist -- he won't listen to what I'm doing, claims it has no impact, and then when things go far better than the evidence would suggest, or than he expected, he shrugs and says it's a fluke. Sometimes, flukes are part of a pattern you're not seeing.) Some doctors threaten to fire their patients for going off the USDA (or the ADA) recommendations. I don't get that. (And, to be fair, many doctors are saying, "Whoa. Wait a minute, here. What's this?" They have a special place in the hearts of every patient who has healed and gotten his life back.)

I get that a physician has a responsibility to provide a certain standard of care for his patients, and that this standard is described by protocols in place. But we must always be learning, and taking notes to facilitate knowledge and understanding is not precluded by that mandate. If what you're recommending isn't working, and something else works, you don't have to become a kool-aid-drinking-total-believer. But take notes. And if you see it happen again, take more notes. Look for patterns, and if you start to see a pattern emerge, pay attention. Have the mind of a beginner. Why is this not the norm in the medical profession? Was it ever? (I want to say it was, but then I think back on my antibiotic-happy family physician and reconsider my stance... the truth is that I don't know.) I do know that most people become physicians because they want to help people. They want to improve lives, facilitate health, be an integral part of making this world a better place. But it's easy after a while to defer to protocol and forget that we're still learning.

Am I saying Ketogenesis is the answer for all the world's ailments? No. I'm not. Do I think it merits a serious look for some ailments, particularly diabetes? Yes. Do I wish that more people were taking notes and comparing them? Yes. Do I wish I'd gone into research and learned to take better notes, myself? Oh, goodness, yes.

While teaching the kids science over the years, my mantra has always been,

"Once you start acting like you know all the answers, you stop asking questions. Don't be that guy."

Because while there is SO much we know now, there is SO much we do not know.

When I'm an old lady and you see me in the street, yelling, "Take notes! Pay attention! Look for patterns! Talk to others!" Well, you'll know why.

Be encouraged!

~ Dy

Tuesday, January 10

It's Not All School

In spite of the fact that paperwork and prodding are taking up a ridiculous amount of time these days, that's not all that's going on (because it's never just one thing, is it?) and there are plenty of fun things happening, as well.

I am down 45 pounds from Christmas 2014! The kids don't really appreciate my enthusiasm over that -- they reply with all the things I've told them over the years. "It's not about a number, it's about how you feel..." And yeah, OK, that's true. It is. But FORTY-FIVE POUNDS IS PRETTY STINKING HAPPY MAKING. And yeah, I feel great. I've ditched a small rucksack of books. An angry toddler. A really terrifying snake. (Truthfully, I don't have a handle on just how big a 45 pound snake would be, but we have cottonmouths, and just thinking about that gives me the willies.)

They actually came to appreciate the magnitude of it when they were watching old clips from Just Dance that winter and caught a Big Foot style sighting of their mother walking across the background.

"Holy cow! Did you see Mom?"

(*rewind, play it again*)

"Whoa! Man, you were... I mean, huh. *shifts voice from incredulity to thoughtfulness* You have lost a significant amount of weight."

*blank stare*

Yes. Yes, I have.

"You must feel SO much better!"

*snortch* Yes. Yes, I do.

And it's not about the number. It's not even entirely about the weight -- I'm guessing that ditching the cancer has done tremendous things for my energy and vigor. :-) But the overall healthfulness is encouraging. Being strong enough to live the life I want to live, and being energetic enough to do it well, are huge blessings that I don't take for granted.

I won't go all door-to-door missionary on you, but if you want to know more, look at Drs. Phinney and Volek and their nutritional ketogenic therapies and way of eating. It's good stuff.

Maybe eventually I'll loose enough weight that I can do a whole pull up, eh? (I kid. I'll never get up to a full pull up.)

Be encouraged!


Sunday, October 4

The weather has cooled off so nicely, and we don't have any of our cold weather clothing out! Also, I realized the other day, when the high was 65 degrees, that we don't really understand "cold weather" anymore. We were freezing! (It was wonderful.)

We saw the strangest thing at dance last week: the Mayberry PD car. Or, maybe not the, but a (although... how many of these are there?) At any rate, I thought it was neat and made the Littles go stand in front of the door for a picture. The Bigs would have understood how cool it was, but they were off being responsible. The Littles let me know they thought it was awkward, and potentially inappropriate, to approach someone else's vehicle and take pictures. 

When we do groceries, we try to find something new to try. We've always done this, and it's just sort of our thing, now. (When the boys were small, it was more a clever means to avoid the impulse buys at checkout - nobody thought to whine over a candy bar when he was holding his very own pineapple or ugly fruit or whatever delight he'd found in produce. Now, it's habit.) This week, Jase and Em found a beautiful, colorful, enticing vat of assorted licorice candies at Sprouts! They smelled horrible, but we had stuck to the list and we hadn't grabbed anything unique, so we thought this would be something fun to try. It was fun, but they tasted about as good as they smelled. I think James got them all -- he's the only one who found anything positive to say about them. The rest of us just took a snapshot and called it good.

And back to schooling. Or not. While the Bigs worked on portfolios and chemistry research, I found the Littles camped out in the den, playing a game they'd created. They were still hashing out the rules, but paused so I could snap a pic for Z. Sometimes, a little reminder of why we're doing what we do goes a long way toward getting us through another long day.

This has been low immunity week for me. I'm covered in bruises, a little tired, and more than a little irritable. Thankfully, it's short-lived. In the meantime, life! School, reading, playing, dancing, hiking. Not nearly enough napping. We should remedy that. But the rest? It's good. Even when it's a little awkward, or gross, or not really what we ought to be doing at all, it's good. I'm glad for that.

Be encouraged~

Friday, September 11

Half-Way Point

We got the results of the scan today, and we're on track to wrap this up in November. It's not gone (it may never be gone), but it is responding, and the scary bits have backed off quite a bit. I didn't realize until we got back in the car that I'd been holding my breath, so to speak, since the scan. Prior to that, I'd been so busy bracing myself. Once I exhaled, I was left with a deep tiredness. Happy, yes. Thankful, certainly. But mostly exhausted. *whew* What a ride.

At the halfway mark, I've noticed a few things:

* I'm not getting the awesome weight loss I'd hoped for. Hrmpfh. But now that the masses aren't pressing on my arteries, I can get back to the gym. Maybe give things a boost for this last few laps.

* While food smells don't make me sick or nauseous, I'm not loving food the way I normally do (and I DO love me some food!) I still eat, but I can't remember the last time I was legitimately hungry, and I sound like Ben Stein when I compliment the food. (Go ahead, say, "this is delicious" or "this is great, thank you" using his monotone inflection. You'll laugh at yourself. Or at me. It's OK. I laugh at myself, too.)

* Still not 100% okay with the thought that this is a life-long chronic condition. However, a friend said something at the onset of this that another friend reminded me of today. It's going to be my focus for the coming months: a lot of people die with lymphoma, but not many people die of lymphoma. (If you tilt your head a bit and half-smile when you say it, that's actually very encouraging. People die with acne, or with a lisp, or with a cowlick, too. We all have things we'd like to change. But still we live.)

* When you don't look sick, people forget that you need help. You have to ask for it. Sometimes, you have to sit on the couch and announce, "This is low immunity week and I am not moving until there is somewhere safe in this house for me to move to."

* Moving helps. And sometimes not moving helps. It's important to listen to your body without guilt or letting your inner voice tell you how it should be.

* People can be awesome. Let them.

* This is hard on others, too, and it's hard to find that balance between getting what you need and helping others get what they need. But it's important to try.

There's probably more. Strike that, there is more, so much more. I'm looking forward to posting a what-I've-learned entry at the end of this.

So Monday's another round of chemo. Moving forward. We've got this.

Be encouraged~

Wednesday, September 9

Mid-way Through

Today is my mid-point scan. Part of me thinks we should re-enact the fight of the 6yo me who didn't want to go to Mrs. Schnitzius' class. (It was a pretty epic fight on a six-year-old's scale.) The adult part of me is being rather stoic and philosophical, preparing and planning. Thank God that part still functions. As I went through the prep instructions, I got to the part about clothing. They recommend "comfortable clothing with no metal (like zippers)". I have... Well, I have one piece of clothing that fits this requirement.

A pair of yoga pants.

So I sat in my room, stared at my yoga pants, and wondered for a while if I could actually wear them out in public with a straight face when I know full well that I'm not working out. I'm not even going to walk quickly today. Then I slipped them on and giggled a bit.

A friend texted some support and I shared the situation with her. She reminded me of this, and now we both have this song stuck in our heads...

It's also JakeRabbit's birthday. He's at the lake with friends, celebrating another friend's birthday, so although I miss him and hate that his birthday is Scan Day, I know he's having a lot more fun than we are! My friend (the other boy's mother) sent me a pic of JakeRabbit enjoying a birthday breakfast, complete with bacon, eggs, and a cake. They're going to swim before the storms hit, then hang and play and squirrel around indoors. Not a bad way to turn 12.

OK. First bottle of Redi-Cat down (berry is a lot easier to choke down that the mocha -- it tastes less metallic). Time to crack open the second bottle and take this bad boy on.

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,

Wednesday, August 12

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,

Friday, April 19

Over the River and Through the Woods

... to the doctor's place we go!

I'm thankful that we can have these visits when we need them. I'd much prefer more time with family and friends and a little less face time time with the doctors, but once again, our Amazing doctor rose to the occasion.

Buddy stepped on John's toe shortly after we got home. It blew up - just ruptured. I put on my business face to deal with it, but on the inside I freaked out a little. It was beyond an order of magnitude for just a cut from a doggie nail. We cleaned it and treated it at home, but that just made it angry. Of course, this happened on a Friday. If you want, think of it as the opportunity to try a home remedy first without guilt, right? So, come Monday, we took him in. The doc looked at it and figured out that he'd had an ingrown toenail, and Buddy cutting it had just released the pressure. Oh.

:awkward pause:


We left with a prescription for antibiotics (booyah for modern medicine!) and instruction in a fascinating technique for treating an ingrown toenail. If that doesn't fix it, he said to come back and he'll take it off. Just like that. As if he were saying he'd remove a splinter or a stray eyelash.

John and I shared a full-body shudder over that one.

Then we asked about biking, since running is off the table until this is dealt with, but we've got three big rides coming up in the next six weeks. Doc said, "Eh, get out there and bike 25 miles and see how you feel." His reasoning is sound - you pedal with the ball of your foot, not your toes. If they're taped properly, it shouldn't be a problem. If you're in actual pain at the end of one ride, don't do the other. So reasonable. Like I would be if it weren't my baaaabbbyyyyyy! This is why we picked him. He keeps me sane.

And yesterday, James got braces. Just across the top and part of the bottom right now. They need to get those out of the way so that they can put brackets all the way across the bottom without them bumping and coming back off. He is handling it like a champ, like he handles so many things that are unpleasant: acknowledge that it's a good thing, embrace the benefit, muster just enough belief in that so there's no whining or drama. I didn't expect that he would become such a rational young man, and I'm proud of him. He is light years ahead of where I was at his age. Or within a decade of his age. Gosh.

Still, it's a pretty big job and it's going to take a while to get him squared away. So Z ordered a Raspberry Pi for him. Because Z's a softie, and he knew that would take the focus away from pretty much anything else going on.

Probably also school, but we'll deal with that as it comes. ;-)

John had his records done this week, also. We'll figure out Tuesday what the plan is for him.

I think our next family project will be selling plasma to help pay for all these plans.* Maybe we could bike down to the blood bank?

Kiss those babies!


Sunday, September 23

Seriously? Again?

We were busy today! Zorak welded a traveling stand for the plow disc cooker. It has clips to hold the disc vertical, and the propane tank fits inside, so it's now ready for next weeks' Big Inaugural Outing with the boys. (Not only will it travel more easily, but it's significantly more stable than the fish fryer we jury rigged in the first place. Go, Z!)

John cleared the sloped portion of the front yard, and we brainstormed a mulching/garden plan for it that should be more aesthetically pleasing as well as making the space more productive. Zorak hammered out a plan to refurbish an old stone bench to a useful state (we lived here five years thinking it was a creepy grave stone before a neighbor told us it's a toppled bench - so really, it's rather flexible, but should be put to good use in some form or other).

James and I began work rehabbing the tiered... plant... um, spaces...(?) at the front of the house. What it really needs is a bull dozer, a load of brick, some perf pipe, and a little zen garden master. Or maybe a 1950's horticulturist with a penchant for color. It gets... us. But we have some semblance of a vision, gorgeous weather in which to work, and a willingness to wing it until it looks about right. It's amazing what you can do with that much on your side!

We got most of the wall rebuilt and reinforced before James accidentally cracked his finger between two rocks. It looks broken. Ice, anti-inflammatories, rest, water. Wee. (Although I'm a little unsettled about having to take the child in *again* for a broken bone, I am once again unbelievably glad we went with the guy who handles these things instead of trying to find a pediatrician. Childhood illnesses are not so much our bane. Gravity and friction, however, seem to be kicking our butts.)

Shortly after we got him squared away on the couch, I noticed the yellowjackets swarming the area we'd just been working. Never found the nest, but it's good to know they're out there. Even better to have been inside when we found out!

We finally listed the old washer/dryer unit on Craigslist, and it looks like it'll have a new home in a day or two. And, we'll get the front porch back.

Wow. If we keep this up, the place may just look like somebody actually lives here!

Kiss those babies!

Friday, September 21

Too Pretty To Stay Inside!

This is it. This is the good stuff. This is windows-wide-open, feet-up-on-the-porch-rail, run-until-you-drop-just-because-you-can weather. This is the weather where you can drink coffee and not feel the need to justify it, or face the wiggly eyebrows of others as they glance between your steaming mug and the thermometer outside. This is the weather that makes me want to read interesting books, write thoughtful letters, and spend idle days in the woods with good company.  This. is. good.

The boys went hiking last weekend with their Troop. Awesome boys. Awesome Scout leaders. Everything you could want in Scouting. They had a great time. We saw some of the most beautiful flora, and... interesting fauna.

Could have done with a little less of the latter, to be honest. But you take Nature as she is, and, well, sometimes she's a little creepy. We've all been there. I don't judge.

I won't regale you with the tick story. Just trust me when I say I was thisclose to agreeing to up and move in the middle of the night. I hear the Arctic is nice this time of year... Also, two thousand mg of garlic daily is *not* enough to keep seed ticks off of you. Nor is DEET. Nor is any possible combination of the two. And those bastards can *bite*. Wow. (I'm sorry. That sounded judgey. OK, maybe I will judge. You bite my kids, you get no love. That's just how it goes.)

We haven't ridden or hiked much this week, what with the open wounds on our feet and ankles. (The toes! Every toe is covered! Ew!) Mostly we've just hobbled about in flip-flops with our pants rolled up, a cotton ball in one hand and a bottle of Calahist in the other. Got a lot of reading done, though, which was great. Again with the balcony love. (Seriously, if you have the opportunity to have a balcony, grab it, folks. If I'd known how much we would use ours, we might have put it in before we did the kitchen cabinets. Love!)

But today, the call of "highs in the 70's" lured us back out onto the trail...
It really is just too pretty to stay inside.

Kiss those babies!

Friday, May 11

Oh, wow.

There were farmers at the market! We scored collards and onions, berries and jam. The kids were oh, so happy. One of the farmers asked John if he's still cooking, and John told him he's planning on making a French Onion Soup with these onions. The farmer threw in extras. *love* He made it last night - we made ten cups of French Onion Soup, and there wasn't anything left! Em ate three servings. It was so good.

Jacob's new hair is much easier to pick through. He likes it, and said his head feels pounds lighter. He's been very good about remembering his probiotics, which is nice. Unfortunately, he's also having weird reactions to other things. He had a rash the size of a silver dollar pop up on his neck Wednesday, at the site of a sting or bite or something he'd gotten Sunday. I freaked out a little, but a friend reminded me that strong or unusual reactions to things are typical, and to mark the boundaries and watch it. It's shrinking. Just a rash. Kids get rashes. They're fine. Mommies get Irish cream in their coffee at the end of the day. They're fine. It's all good.

The Pack had its planning meeting Tuesday night, and it looks like we'll have a great year ahead. The Troop needs to have a planning meeting sometime soon. The boys went over to help their SPL clean out and organize the trailer yesterday. All the boys worked hard and brought some great ideas to the table. It was an encouraging day.

Today, however, we're being kicked outside to work. It's a day without rain in the forecast, and that means we have to beat back the foliage while we can.

So, to work!

Kiss those babies!

Monday, May 7

T is for TICK!

This is when I really, really want to move.

We all take garlic every day. We do regular tick checks in the evening, and impromptu checks throughout the day. We use diatomaceous earth in the immediate vicinity of the house (but not all over the property, so it's probably moot, but even the psychological barrier helps). We Frontline the dog more religiously than we make it to communion. And still, we find ticks. It's just part of living in the South if you ever leave your home. Ever. Especially if your home is in the country.

And this week has been a bugger of a week for ticks. *shudder*

Yesterday, Jacob found one embedded on him. Deer tick. Engorged. His thick, curly, dark gorgeous hair is just the perfect hiding spot, and somehow I'd missed it during Saturday's checks. There's no way that thing hadn't been in there for a while. Gah!

I ran through the factors (length of time, engorgement, that he'd manhandled it out instead of waiting for one of us to use the tweezers, plus his fever, aches, stomach pain, swelling at the site, and a redness forming on his scalp), talked to friends who have experience with Lyme, girded myself with the information we needed (just in case) and called the doc.

I love our physician. I love his staff. I love them all. We are making them cookies. They didn't poo-poo us with the "We don't have Lyme here" routine (We do. It's not epidemic, but we do have confirmed cases in Northern Alabama. But there are still people who will swear we don't have it "here".) They didn't roll their eyes at the crazy lady with the theories. They got him in, checked him out, ran the factors, did the math, and then talked with us. I. Love. Them.

So now Jacob has a 21 day program of antibiotics, and a program of probiotics. And I have a physical weight released from my gut. Not to mention a bazillion dozen cookies to bake for the doctor and his staff. It means the world that they are thoughtful and proactive, that they have taken the time to stay on top of the latest protocols for diseases, that they are so thorough and focused, that get to know us and to listen to us. There's just so much I appreciate about them, from top to bottom.

Unfortunately, if we moved, we'd lose them! Talk about a catch-22!

Kiss those babies!

Monday, January 23

Lost the cord again!

I saw a camera the other day that has the USB bit attached to the camera. Santa needs to see about getting me one of those for Christmas. In the meantime, we've cleaned the house, and there's no sign of the camera cord.

The camera is full, though, as the kids have been making videos. Oh, I need to buy each of them a camera with a boatload of storage (and an integrated USB dongle). The videos are sweet and funny. Or, they are once I stop hyperventilating over the fact that children don't tend to pick up before they film. Heh.

School is going beautifully. The first two weeks have been great. The kids' new math books arrived last week, and they dove right in. James moved over to Wheelock's for Latin. I hate Wheelock's, but he's happy. He'll wrap that one up this term, and then... I dunno. Orberg? Wing it? No clue. But that's not now, so we'll enjoy the rest of this term. We're hoping to have a few good adventures along the way!

John's ankle is healing well. He's off the crutches, and winging about with the boot. I've put a total moratorium on Paper On The Floor. Normally, I try not to be too uptight about it. It's hard not to have paper on the floor when someone is always sketching or drawing or making diagrams - between the five kids, there's... there's a lot of paper. Aesthetically, meh. But if you step on it with a boot? You're goin' DOWN, folks. And I can't... we can't have two broken bones on one child all at once. *shudder* For the time being, paper is now a Controlled Substance.

Jacob brought me the first Daffodil of the year, yesterday! We don't normally get them until February, but here they are. It's been a wet and balmy winter. I hope we haven't missed our pruning window for the trees! We'll check this week and see what we can do. In the meantime, we have a beautiful bit of sunshine in the kitchen window. Hopefully, it's the first of many to parade through the house this year!

Kiss those babies!

Friday, January 6

A Different Plan

The bed risers came today. We got them installed. (Or, put in. "Installed" seems a bit heavy on the pretense, doesn't it? All we had to do was lift the bed and slide the feet under each corner.) It's pretty neat, except Jase seemed to think we did it just so he can't get in the bed. (He figured it out, and all is well in his world, once again.) However, we didn't do much with the room, because we ended up with a different plan:
Yay for picking the Sports Medicine doctor as our regular doc! 

John took a tumble playing (ironically) Wipeout at the skating rink today. I have NO CLUE how to tell if an ankle is broken. It seemed broken - my gut said it was broken - but everyone around us seemed to think it was just a nasty sprain. And honestly, I couldn't have given one good reason to think it was more. Barring actual bone protruding through the skin, I'm not sure I could spot a broken ankle vs. a sprain on any given case. So we called our doc, explained the situation and John's condition, and they got us in this afternoon to give it a look. Three cheers for in-house x-ray, and immediate diagnoses without having to go to the ER! (We are all about the bright side, here.) He did break his ankle, right by the growth plates. Doc has made it clear he will be very aggressive with keeping an eye on how things heal up, and we'll adjust The Plan as we need to. In the meantime, John's got a boot, and he's to live in the boot and love the boot and use the boot to garner sympathy and milkshakes. Well, I'm paraphrasing, really. But yes, the boot stays put. The boy stays still. We'll check in on Monday, then again in two weeks.

John's so good-natured about the whole thing. He'll be fine and right as rain in no time. I really wonder where these kids came from, but wherever it is, I'm keeping them. They're awesome.

And yes, we stopped for an ICEE on the way home. (I offered a milkshake, from Zaxby's, even - actually, I kind of begged, because that did sound really, really good - but he had his heart set on a squishee from the gas station, and who was the stop for, anyway?)

Bedskirts and sheets can wait for another day. I'm just very glad we could get him taken care of - and that we have such a fantastic doctor (and ALL his staff - really, the whole practice is superb) to help us put them back together when they start to fray at the seams a bit.

Kiss those babies!

Wednesday, September 14

Domestic Bliss? Sure, okay.

Today, I wished it was still Saturday. Saturday, we ate with friends, enjoyed the mother of all household bon fires, played with the kids, and wallowed in the gorgeous weather.

Today, we were at the dentist again, then to the post office, the museum, music lessons, gas, errands, groceries, Scout preparation, and... and that's when I fell asleep on the couch. The Novocaine had worn off, but the Ibuprofen hadn't kicked in, so sleep seemed best.

Naps were a lot more restful before I had small children. Namely, Jase. A prone adult figure just begs to be scaled, leapt from, leapt on, kneed, poked, and coated in whatever he's eating at the moment. I'm sure it's great fun when you're three, but it's not so much fun for the prone adult.

Zorak made enchiladas (because he loves us), and then we enjoyed piling everybody on the couch to watch Shaun the Sheep. By the end of the day, I was glad it was today, because even the busiest of days end up with all of us, together. I can't beat that.

Kiss those babies!

Friday, September 2

That's Done

I saw the doc today, to have him check out this cough that's not going completely away. He said it's normal to have a residual cough for up to six weeks after having pneumonia. I guess I looked a little queasy at that thought, because he was kind enough to assure me that's the outer edge of normal. (Then he not-so-encouragingly added that after about 12 weeks, it shifts from "acute" to "chronic" and then you have to start looking for other things.) I put in my vote for residual and acute, grabbed my prescription for more prednisone, thanked him profusely for his time, and got out of Dodge before he could think of anything else to share.

Then I came home and mopped the floors. Something had to give. If we ever win the lottery, I'm going to go hog wild and do crazy things, like hire contractors to finish the work I'm just too tired to spool up on, and pay someone Very, Very Well to come mop the floors once a week.

We missed the homeschool skate today - because I'm not the only person who holds off on seeing the doctor all week, then, when things don't clear up by Friday, decides it's better to go in *now* than risk an ER run at some point during the weekend. Bless the doctors who are open on Fridays, and deal with the backlog so gracefully. But the kids who lose out are also appreciated, and we'll try to catch the public skate tomorrow, after the Battle for Decatur. It's a Civil War display, and looks to be very interesting. I love historic re-enactments, regardless of the era. But I could never participate in them because of the attire. These things are always hosted in the dead-on heat of summer, and have you ever noticed the clothing for the dead-on heat of summer is *the exact same clothing* they'd wear - comfortably - in the stark, cold middle of winter. The kids love the presentations and lectures. I miss out on them, though, because of the monologue running through my head...

"You are so, incredibly, unbelievably tough... My word, but you've got to be dying in that thing... how many layers is that? Wow... I wonder if they've experienced spontaneous combustion at one of these things?"

And so on. Until I'm ready to go steal a Squishee machine and haul it to the field. FREE SQUISHEES FOR EVERYONE IN COSTUME!!!

The ice skating rink will be a lovely reprieve after that. The kids will love it! Maybe I'll try to steal a few of the participants, too, and buy them Squishees at the concession stand. They had Squishees in the 1800's, right? ;-)

Kiss those babies!

Friday, August 19


I do love that show. But no, really, I thought we were well. We were well. Except, I had a cough that would not go away. At all. Finally, when sleeping upright in five minute spurts lost its novelty, I went in. Ha - pneumonia. Part of me was glad the doc didn't just tell me it's a virus and there's nothing he can do. (That's a typical Mom Fear, there. You hate to go in for a virus, knowing you could come home with Staph or Malaria or something and just have to go back later.) A (much larger) part of me was SO thankful it wasn't something Really Big And Scary (that would require biopsies and blood). And then a wee, small part of me had to roll its eyes and say, "Really, Dy? Way to go, there, dork." So, a short course of steroids and two weeks of antibiotics later, and we are back in business for real. And all the parts said, "WOOHOO!"

Fingers crossed, and all that.

We had Scouts today. The Bears made bird houses. BSA regulations limit Bears to using only hand tools, but they made the most of it and the houses turned out fantastically!

Our Webelos made the most amazing bat box. (He gets to use the power tools. He did a wonderful job.) He also did some research and taught the rest of us quite a bit about bats. Then Zorak filled us in on more neat things about bats and bat boxes. Now I want a bat box.

The siblings made pine cone bird feeders. The basement smells like the Chipmonk's cafeteria -- all cedar shavings and food.

We have a hike and a spelunking expedition planned for next month. I can hardly wait! There's been more, too, but the laundry calls and for some reason this dinner won't cook itself, so for now --

Kiss those babies!

Tuesday, August 2

Back to Business

Zorak fell to the crud this morning. The alarm went off, and I heard through the darkness, "My throat... oh god, I need sleep." Yep. That's pretty much it. Thankfully (sorry, Love), he didn't give in to it until this morning, which left him free last night to finish configuring the ventilation on the washer/dryer unit and put it back into place! If we were younger, or not sick, there would have been much fist bumping and booyah-ing. We settled for a test load of whites and satisfied nods. I'm still somewhat surprised that it doesn't feel as dull as it sounds.

Meanwhile, everyone else is healthy and mobile again. As much as I hate it when we catch a virus, I do so appreciate that they're short-lived and not life-threatening. SO thankful.

I had a follow-up with the periodontist today. Had all the body parts crossed, and set a few things on fire in the hope of getting good news. I told the hygienist I felt like a kid at exams, hoping to pass. Something worked -- I got the green light to see my regular, everyday dentist next week to get started on the very last leg of this whole process. (Then I squealed at the hygienist, "I passed!" She laughed. My very sweet, very proper perio only looked between us and muttered something along the lines of, "ok, then." I think he just knows intuitively it wouldn't be funny, even if we explained it.)

And really, I have no clue what else happened today. Been floating on the cloud of relief, hearing the sweet mantra of "almost done!" in my head. Good, good stuff. James gave me a mental high five for getting done just in time for him to start with the orthodontist. AAahhhhh!

Kiss those babies!