Showing posts with label NHL. Show all posts
Showing posts with label NHL. Show all posts

Tuesday, June 27

Houston, We Are Clear

Labs are good!

WBC is slowly recovering from the Rituxan. Actually, all of the numbers that are out of bounds are the residual effects of the Rituxan, and they're all moving in the right direction from eight months ago.

Renal function is a-okay. (*whew* - seriously, that one makes me anxious - appreciate your kidneys, folks, and give them some water, OK?)

LDH - not spiking, which is a good indicator that there's nothing cancery running amok in the system at the moment.

We're still on for a sexy full-body PET scan in January. (IV, so no contrast to drink! W00t:! That sort of made my day, to be honest.) If that's clear, we can move on to every-two-years. I would like that. I would like that a LOT.

In January of 2020, EmBaby will be turning 14. Jase will be so very close to 12. That's a lot less scary than when they were 9 and 7. The older two boys will be getting established on their own, and Jacob will be looking his Senior year in the eye. I'm not willing to miss any of those things, but we'll have more latitude as a family to deal with whatever may be, then. Granted, we'd love to just not deal with it. That would also be fantastic. But for now? I'll take a two-year step. That's a good start.

In the meantime, and I'm not being trite when I say this, I'll keto-on. I hope to keep it at bay for as long as the laws of Physics and Biology will allow.

I'll also get another lipid panel and thyroid done, just as a set point/baseline, and to make sure everything's recovered in that arena. (But blood glucose today was 80. That's a happy number!)

There's not big exhale at this point, which is a shame. I was rather looking forward to one. We'll still wait until the January scan before taking out the port (which Z reminded me really should be done by a doctor, LOL -  it is a wonder he puts up with me).

And this is life, post-chemo. Long periods of laundry and driving, of reading and chatting, of praying and studying, punctuated by a couple of heart-racing hours at the lab or cancer center, and then, if we're lucky, back to the laundry and driving. Hard to write that in a way that's engaging, but it is good. It is so good.

Be encouraged!

~ Dy

Monday, June 26

*POOF* Busy weekend!

I thought for sure I'd posted over the weekend, but no. Know what else I didn't do? Sleep. Clearly, I should have thought things through a bit better.

Although, to be honest, I don't know where to cut anything, or how to make it happen in a sane way. It feels like we're holding everything together with surface tension at the moment, and I'm afraid if we poke it, the mess is going to be enormous.

Friday, we ran errands, we cleaned the house, we had a little Come to Jesus about the condition of the house, and we worked on the Volvo some. Normal stuff. The Volvo wasn't yet up and running that evening, so Z stayed up to retrieve one of the boys from his shift at Hamacon.

Saturday was full of trek prep, home repairs, more errands, more Hamacon retrieval, Volvo work, and a show at the VBC (Jacob walked, so that was 4:00-9:30PM, there).

Sunday, we had worship, which was fantastic. And pot luck, which is always restful. I am thankful we can do that. Then I had to be at a casting (nothing glamorous, just helping with sign-in -- although I did get to dance and snuggle with a precious baby for most of it, freeing up her parents to be more productive than I could be - that was a win), and Z took the kids to a birthday celebration for a lovely young woman we know. I headed over after my shift at the casting and passed the keys to John. He left for work. James arrived at some point and...

We all sat. We sat and visited and just did. not. move. It was glorious. We stayed WAY too late, and I feel a little guilty about that; however, it really was glorious to just be among kind people, chatting about hopeful things, listening to kids laugh and talk. Balm for the soul, right there. Also, how can I cut *that* out in exchange for sleep? That was just as rejuvenating as anything else we could have done.

Again, thankful.

There is so much I am thankful for, amidst the exhaustion.

This morning, I tried the Fat Coffee I'd purchased for the trek. (Realized, after a discussion with someone else about how coconut oil just, erm, tears through them, that I ought to try some NOW for the first time, rather than on the trail.) It tastes like 1970's-era instant decaf. So, not exactly something I'll look forward to on the trail, but I'm working up some kind of nostalgic affection for it. We'll see how that goes.

This afternoon I head in for six-month labs at the cancer center. Praying for a clear report. Actually, if you want to be very specific about it, I'm praying for labs that are good enough that we can punt the next scan another six months further down the road. So, if you're up for it, that'd be magnificent! There's more to the day, but that's all I'm focused on at the moment.

Be encouraged!

~ Dy

Friday, May 5

One Year Remission

Jase asked me a month or so ago, "How long will you be keto?" "Forever," I replied. He was a little surprised, as his nine-year-old mind had processed nutritional ketosis through a therapeutic lens, and he'd come to view it similarly to medicine or chemotherapy: it's something you do when you need it, and then when you're better,  you stop. So we talked about the value of healthy lifestyles and choices, about using the information available to make choices for your life. It makes sense when it comes to education - you pursue the best education you can, and when you find better options you make use of them. It makes sense when it comes to relationships, physical activity, and spiritual health. However, it's easy to forget that the same approach applies to nutrition. We had a good discussion.

The other day, Facebook cheerfully shared a "memory" with me. The image was of a post I'd made from the parking lot after the oncologist finally conceded to use the word "remission". (It's not as though I still had cancer and I'd coerced him into saying I didn't. He was just oddly reluctant to use that term. He'd say, "You're all clear," and, "You're good to go," and even, "There's nothing there. You're good." He did not want, however, to just say the one word I, personally, wanted to hear out of his mouth. I suspect he's had patients misinterpret the term, perhaps? Probably similar to knowing that there's a reason hair dryers have warnings not to use them in the tub. Something happened at some point, and now everybody has to watch what they say. However, I needed the psychological response of hearing the word, so that's the direction I dragged the conversation.)

One year.

Really? That's it? I feel like it was a lifetime ago. Considering I only just dealt two weeks ago with the active realization that it's been two years since diagnosis, this should not have been surprising. A quick recap of events bears it out. However, it's been two years of learning by immersion, by means of drinking from a fire hose; two years of integral study and application in tandem; two years of reading abstracts and papers, of compiling collected data and interpreting anecdotal content. Let's face it, it's been a very busy two years.

It also explains why this past year has been such a logistical nightmare for me to keep up with, mentally -- both because it really has been just-barely-over, and also because I have expected my mental function to be that of a 24 year old with only two children to keep track of instead of the 40-something year old with five children, one graduating, home renovations, and just-barely-post-chemo that I am. There you go, then. Poor perception and unrealistic expectations make for a weird year. They also make it feel a bit longer than a year.

Through it all, I've maintained a low-carb lifestyle and nutritional profile. I need to round up the material I used to come to the conclusions I did so that you'll understand why I am so enthusiastic about this. Why I encourage anyone to consider low-carb, fasting, hydration (always with the hydration), and supplementation when they're facing chemotherapy. It's not enough to offer anecdotes, from the oncology nurses who couldn't believe how few side effects I had, to the oncologist who was surprised to see how strong I was in spite of what the labs and scans revealed;  how my lipid profile has remained excellent in spite of a diet that flies firmly in the face of appropriate authority; how I'm stronger now, healthier now; how even getting dressed is literally effortless (a feat many take for granted), being down 50 pounds and agile as can be. It's not magic, or voodoo. A ketogenic diet can be a significant support to traditional cancer therapies.

This is so much a part of my daily study and interaction that I forget that it was a cancer diagnosis that drove me from Paleoesque into nutritional ketosis and a thorough understanding of what I'm asking of my body and how to treat it in the process. It would be good to share the processes that brought me to that point, and by it, through to the other side.

Be encouraged!

~ Dy

Wednesday, April 26

Anniversaries

I've never been good about remembering significant dates. Birthdays, anniversaries, even some of the major holidays... they sneak up on me. It's not that I don't care about people. It's all dates, even mine. A few years ago, Z and I spent an entire day doing our thing - he took the Aunts out visiting museums, I had one of the Littles with me, painting the house. Sometime in the evening, I checked my phone for something and saw the calendar: Happy Anniversary. Oh. Hey Babe, it's our anniversary. Love you.

But it's not just the happy dates that I can't remember. The more somber dates? Oy. No clue. I'm not callous, or uncaring. I remember the sorrow, feel the loss, mourn with those who do remember, who do observe individual days of loss. But the specific days don't linger in my mind. They don't become anchor points or mile stones that point to the passage of time. I don't know, for instance, off the top of my head, when my parents died, when I lost a baby, when bad things happened... I know they did. They were awful. But the dates don't stick. (I recognize that this is different than so many people I love and cherish, and mentioned to Z once that I worried about it. He suggested that it's probably a relatively healthy mechanism that's kept me from losing my mind - there was a lot of death in my life, growing up. I love him for that perspective.)

So it came as a bit of a surprise tonight, as we shared a little of our backstories in a group I'm in (lots of new members, and it's always easier to know how to support or encourage someone if you know where they're coming from and what their goals are, so we did a short introduction thread), and it hit me that it's been almost exactly two years since I first heard the doctor say, It's cancer. And that hit hard, which was weird.

Two years, with 15 months in remission. I give thanks for that every day. But I don't remember the day.

Only six months of chemo. Special thanks for that - that it's available, and that it wasn't longer. But I don't remember the dates.

The port still irritates me and catches on things, but I'm clumsy at the best of times, and I still maintain that is one brilliant invention. But I couldn't tell you when I had it put in.

Getting dressed yesterday, I was taken aback by how easily my body moves and does what I ask it to. I gave thanks. But I don't know when it had stopped, or when it started again.

Tonight, recalling dates as I tried to reconstruct a timeline, it just struck a resonant chord when I realized we are right at the scene of Z and I sitting at the restaurant, quietly eating while we processed the news.

"I don't want cancer. This is stupid," I muttered. Like I'm six and someone has made beans and cornbread, right? But we respond the way we respond. A friend of mine, upon being told she had cancer, replied, "Oh, no. You must be mistaken. In my family, we get heart disease." God love her, I get it. The human brain is one of the most magnificent mysteries in all creation.

And I realize it may come back.

A dear pastor here in town is fighting a recurrence of it right now.

The kids' godmother is fighting it right now.

Friends' kids, nephews, parents, friends... all fighting. Right now.

I won't remember specific dates. But I will be right there, to celebrate, to mourn, to rage, or just be there. Because in the end, that's the part that really matters.

Just as it's the life lived between anniversaries that makes the marriage, more than the mile marker we pass each lap around the sun.

But to someone who lives like this, it's still weird to pass one of the more somber ones and recognize it on the way by.

However you note, or forget, dates, remember to let the ones you love know you love them -- so if you forget an anniversary, they won't think you've forgotten them.

Be encouraged!

~ Dy

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!

~Dy

Saturday, June 25

So, we survived...

PET scan in April showed complete remission. I'm really glad for that. A side effect of chemo I hadn't anticipated was the chemo brain. Suddenly, I was totally incapable of doing the *one* thing I've done for the last 17 years - managing our home. It's taken me about that long to get good at it, and suddenly, *POOF*, gone. I couldn't do it. I couldn't interpret a calendar. I couldn't remember what we were supposed to do. I couldn't formulate complete thoughts that led anywhere. It was like living with the Cheshire Cat in control of all cognitive processes. That pretty well tanked all my good intentions to have blog entries about the chemo process and beating cancer (because I totally had no intention of losing this one). Not that anyone would have known that, had I lost. (Aaaannnd, someone's talking to me, again, in spite of the fact that I'm typing. This is significantly easier to cope with when I have my brain back, but I've gotta tell you, it still makes me feel stabby.)

Anyway, we did it. We survived. And now, we're picking up the pieces. There are more pieces than I'd expected. It's like coming out of an amnesiac state only to find your family has suffered some kind of traumatic event that you don't quite know how to address. But we're working on it.

We're also piecing together the educational train wreck that was our Year of Unintentional Unschooling. Turns out, we're lousy unschoolers in general, but not entirely. The kids have continued to learn, in spite of the bizarre circumstances. And I'd wager that the stress of Educating with Dory was less of a hurdle that trying to maintain an institutional schedule would have been. So, there's that. Hurrah for Unintentional Wins!

You want to know what the best thing is for a family surviving chemo? Good friends. I don't mean well-meaning people who can't quite make eye contact but they feel really badly for you. I mean the kind of friends who will take your kids while you have a bone marrow biopsy. The kind of friends who will take up the slack in your co-op schedule because you can look straight at the syllabus and not be able to say whether you need to prepare for oxidation or molarity next week. Because words are hard when your brain doesn't work. The kind of friends who will still be willing to sit and chat with you about over coffee about normal stuff - the weather, books, the upcoming art festival, books-that-aren't-about-cancer, the last Scout trip, and maybe books. I can't tell you how much that means when you're in the middle of a weird experience that you don't want to be in, that doesn't necessarily have an end point, and that may not have the outcome you'd banked your very life on. Be that friend. Have that friend. We were so, so blessed to have more than one, and I just hope I live long enough to pay it forward, backward, and under the table. Because these people were the real sanity savers.

And that, my friends, is so much more than I could have wished for.

Be encouraged!
~Dy

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~
Dy

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~
Dy

Saturday, August 22

Stretching

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,
~Dy

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,
~Dy


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,
~Dy

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,
~Dy