Through Fresh Eyes

Inspirational song: Puttin' on the Ritz (Young Frankenstein)

There is a distinct advantage to having a best friend/neighbor who is of a different generation from us. There are tons of pop culture references from my contemporaries that he just doesn't know about yet, things that we get to introduce him to in good time. For example, Mel Brooks movies. He has seen some of the later ones, like Robin Hood: Men in Tights. But until we sat him down a few months ago, he had never watched Blazing Saddles. Yes, he was as stunned as a Millennial could be that this film was made, even with the "it was a different time, and they were trying to make a point" mantra. Even so, he found it terribly amusing, and now he doesn't look at us blankly when we quote from it. We had to save Young Frankenstein for when his girlfriend (even younger still) was available to watch it, and after we had them over for burgers and what-not this evening, we suggested closing out the night with Young Frankenstein. Some of the scenes that made our teenage peers howl with delight decades ago didn't translate to this audience, but for the most part, they enjoyed the show, seeing it for the first time. I don't think we will do any seriously deep dives into the Mel Brooks catalog, like Twelve Chairs, but it might not hurt to bring up The History of the World Part 1 before the year is out. I'm looking forward to that one.

I'm starting to feel a little better, now that I'm taking my meds again. It was dumb of me to let them go for three whole weeks. I had the energy to make homemade hamburger buns (a gluten free recipe from Goop, actually, that would have been quite plain without the addition of everything-bagel sprinkles on top) and a watermelon salad (watermelon, cucumber, Vidalia onion, feta cheese, and fresh mint from the garden). I bought pre-made patties for the burgers, but that was my only copout. I even had a few spoons left over at the end of the day to do the dishes before we went over to T's for the movie.

I'm not taking this brief uptick in energy for granted. Things start all over next week, and I need to prepare my surroundings. I need to tidy my room before I'm confined to it again, and I have to prep my guest room for my daughter to come visit at the end of the next cycle. She is remarkably easy to please, as far as guest accommodations go, but I still want to make it nice for her. The least I can do is clear my laundry from the bed and put away my painting setup. I get my blood tested on Monday, and the next infusion is Tuesday. If past is prologue (no guarantee it is), the bad stuff should hit right about the time everyone across the country is ooh-ing and aaah-ing over fireworks on Thursday. I would like to go watch the city display, but I doubt that's wise. We might light a few fountains in the street and call it a night.

Murray... How did you even... You know what? I'm not mad. I'm kind of impressed at your ninja skills.

Better Living Through Chemistry

Inspirational song: Wonderful World (Sam Cooke)

How embarrassing not to connect cause and effect in my mind, even when I gave a full rundown of this very long-term problem to my new primary care doc just three days ago. I feel like a right idiot. She was going through my medications list, asking why I was still taking an anti-viral drug after all these years. I told her we thought that getting mono in high school was the trigger that turned on my lupus once and for all, and I’d felt like I had been getting mono over and over throughout adulthood. When tested three years ago, my titers for Epstein-Barr virus were ridiculously high, and I’ve been on an anti-viral ever since. The couple times I tried to go without it, my muscles just flat out refused to twitch and I couldn’t do basic tasks. New doc said, well, maybe you should see an infectious disease specialist and try to go off those meds. And then I stopped thinking about it.

What did I complain about yesterday? The fact that I have been overwhelmingly fatigued, barely able to cross a room, much less function. My muscles can barely hold me up in a car. My brain has been too fried to put this extreme fatigue together with the fact that I failed to take any of my medications during the two roughest weeks of chemo, to include the anti-viral that makes my muscles work. You’re a doofus, Anne. Just because you’re treating the cancer doesn’t mean the lupus went away. Take your damned pills and shut up about being weak and tired.

I took the lupus drugs yesterday and today (the anti-malarial), along with vitamin D. It wasn’t until tonight that I grabbed the one that pushes back on EBV. Maybe in a day or two I’ll feel more like myself, just in time to set the house in order before the next round of chemo makes me sick. I’m on the clock now.

Spoonless

Inspirational song: All the Young Dudes (Mott the Hoople)

For everything that I'm experiencing, I'm totally just guessing as to the root cause. I have no idea what is causing what. I sort of feel like I'm normal most of the time, except for an absolute lack of energy. I don't think it's brought about by sheer boredom, but I suppose it's possible. I have no idea how these cycles are going to play out. Is my muscle fatigue from lack of use? Lack of nutrition? Failure to take my regular lupus meds and vitamin D? Or is this just a standard ebb and flow during a chemo cycle? I'll have something to compare to next week. For now, I'm just making up the answers out of whole cloth.

It takes me forever to do basic tasks. Three attempts to do one meal's worth of dishes. Four days and I still haven't made it all the way through two loads of laundry piled on my day bed. Two weeks and counting to pay the first bill that came in the mail from the oncologist. (If I knew where it got put, it might get paid a little faster.) I'm lucky if I make it in and out of the shower by 2 pm. Sometimes tooth brushing doesn't happen for the first time in a day until right before bedtime. I hate being such a slug.

I kept trying to tell myself to eat today. I tried hard. I had a little of my leftovers from yesterday (very little), and they were okay. I baked a sweet potato that didn't taste as sweet as I imagined it would. Elsa and Murray were troopers to help me get rid of it. And I thought a grilled cheese sandwich and red pepper/tomato soup would be much more enjoyable than it turned out to be in reality. Nothing tastes like I expect it to. I even tried to drink a real sugar soda, and it tasted like yucky chemicals. I'm kind of wondering whether the effects will get worse after infusion number two next week. I mean, it's cool to imagine I'll lose a ton of weight during this treatment, enough to balance out the size differential between my bald head and doughy body. But getting there is just not as much fun as advertised. (Narrator: No one told her it would be fun.)

Ugly Picture Day

Inspirational song: Let It Go (Frozen)

I washed my hair again in the shower. Three times as much came out just in my hands as yesterday. I can't count how many times I said "wow" or "oh, man," as I worked to rinse giant clumps off my fingers. It was enough. I hit the threshold to be done with it. I enlisted the Mr, who went and found his electric clippers, and he gave me a buzz cut. I felt like I should be singing "you're in the army now" kinds of songs while my hair hit the floor. I was dismayed to discover how uncomfortable the experience was. I kept flinching away from the buzzing clippers, and at least three times I asked whether there was one tooth on them that was bent out, scraping me. He swore they were fine. Eventually, the fine baby hair of my undercoat was too slippery for the electric trimmer, and we stopped. I was so glad that torture was over.

I intended to shave with a regular razor over the sink, to smooth everything out. I lathered my head up with hand soap, and washed off a ton of stubble, both droppings from the clippers and stuff that was short and just loose enough to come out. Then I tried to shave, both with and against the grain. I couldn't stand either way. Just like the clippers, it felt like there was a sharp bit poking out, trying to cut me. Turns out, it was really just my scalp, not the implements. I gave up, washed the best I could, and I'm getting used to the stubble for now. Hopefully by the weekend, the rest will fall out and not snag on my hats or pillowcases.

It's a whole new look for me, somewhere between my oldest (male) cousin and Lex Luthor. For reals, now that I see the shape of my skull in harsh light, I can totally see how I'm related to the Reynolds side of my family. As the hair came off, it was some freaky Mad Max style, and I was so glad it was temporary. Since then, I've discovered how cool a bald head is, and I mean temperature cool. I can't wait to see how I sleep tonight, with three fans blowing in my room. I'm slowly getting used to seeing myself in the mirror, up close. Still not enjoying how a tiny head makes a body look even bigger.

Okay, I am going to be brave and put up the pictures. They aren't pretty, but I'm committed to honest representation of what it's like going through cancer. To those of you who knew my family going back a couple generations, one question: do you also see L.B.?

More Than Half Gone

Inspirational song: I Feel Pretty (West Side Story)

I go to so many doctors, so often, that I am capable of forgetting why an appointment exists. I really had no idea why my new primary care doc wanted me to come back today. I went. I wasn't staying home. But I had no clue what we were supposed to discuss. She wanted me to follow up with her after my records arrived (and a few but not all have now). She asked my history of lupus, and what I've done for certain issues, and why I'm still taking some of the drugs I am. She has given me hope for the first time in ages that I might be able to drop one of the prescriptions I really dislike above and beyond all the others. I established with her why I see certain specialists, and she's totally good with renewing my referrals so they're up and ready to go. She said we ought to do a full physical after chemo and radiation are over, later in the fall.

I dragged my daughter along to the appointment, so that afterwards I could take her to our favorite pho restaurant for a late birthday lunch. Two times in one week I got to go there. What a special treat! It's worth navigating an intentionally stupid parking lot to get to it. (Boulder tries to frustrate drivers on purpose, to nag people into walking or biking instead. They succeed in frustrating us, and me, I just find it ableist and infuriating.) On the way there, we stopped by REI, so I could search for beanies out of the proper summer fabrics. I should have just shopped online days ago, when I first googled it. There was a purple beanie advertised as being on clearance on REI's website, for like 6 bucks. There were none on sale, none out of lightweight cotton, anywhere I looked at the store. I ended up with a gray beanie and a tutti-frutti colors convertible neck/head wrap, and I spent a crapton of money on the two. At least they are advertised as cooling fabrics, partly recycled bottles, and 50 SPF on each. I wore the tutti-frutti one after lunch. With such little hair underneath it, my head looked tiny against my still big body, with a tight head wrap on.

I have passed the halfway point. I am almost entirely certain half my hair is gone, probably more. I see a lot of skin at the temples now. I see a lot of skin all over the scalp, really. I took a picture mid-afternoon of where my hair was, and I'm pretty sure it's significantly advanced since I did that. Throughout game night, I fidgeted, moving the beanie around. I think I knocked a lot more loose. I expected to wait until Saturday or Sunday to shave my head. I will be surprised if I make it all the way to Friday mid-day.

Shed

Inspirational song: Beds Are Burning (Midnight Oil)

Another day, another 50,000 dead follicles. It's quite amazing, really, how much hair can fall out at once. At one point this afternoon, I lay with my head against the wedge pillow, while I watched TV, and when I got up, I had woven my own little placemat. I was tempted to take an extra shower before bed, to rinse loose a big bundle of hair, so I didn't have to sleep on it tonight, and itch the whole time. I'm just not that motivated. I'll wash my hair tomorrow before I see my new primary care doctor (why, I can't remember--I hope she wrote notes as to why she wanted me to come back). I have a bright pink scarf I bought at the same time as the maroon beanie yesterday, and I'll practice tying it on my head. Up until now, I had just enough hair that no scarf would stay attached. Tomorrow may be different. And if it fails, I have plans to be in Boulder, and I know I can stock up on beanies at REI. One way or another, this will work.

I had my first hearty meal in two weeks at Rotary today. Even so, my eyes were bigger than my stomach, and I ended up sending quite a bit off to the garbage. I'm sort of enjoying having a meager appetite. So far I haven't regained the gallon and a half of water weight I lost that first week. Weight loss has been one of the few silver linings I've been hoping for through this experience. I talked to friends who have gone through this today, and heard personal stories about how their timelines worked out. One person who seems to have the closest experience to mine so far said that her eyelashes and eyebrows took longer to fall out than the hair on her head. We spitballed a little and decided that was probably because the cells in your lashes and brows don't divide as frequently as the other hairs. I've noticed that mine have stayed attached so far, compared to feeling like my head is a giant white dandelion. I predicted that while I would not bother with wigs, all bets are off with fake eyelashes. Unless my eyes are too sensitive to tolerate them (that friend predicted they could be), I'll buy me some fake lashes, and offset a bland face with some fabulous new lipsticks. I can't predict whether I'll draw in some brows.

Once I've checked my schedule, and run it past family members, I'll plan the big head-shaving event. It could be as early as Saturday, or as late as 4th of July. It will be soon.

Beanie Baby

Inspirational song: I'm Gonna Wash That Man Right Outa My Hair (South Pacific)

The Baldening has begun in earnest. I noticed the first hairs falling out easily back on Friday. Sunday I started getting a little self-conscious about leaving pieces of myself everywhere I go. Today the process is accelerating undeniably. Ready or not, here comes my scalp.

I hadn't washed my hair since Thursday (which isn't that bad--I haven't been the oily type since I was a teenager). I kind of knew it would be traumatic, once I finally did, but I think I handled it okay. Lots of deep breathing, and saying, "It's okay, it's okay, it's okay." I don't know that it qualifies as coming out in clumps yet, per se, but it's well beyond normal daily loss. Once my shower was over, and I was pulling the mass of hair away from the drain, I decided that if I had felted it and stuffed it with catnip, it would have made a sizable artisanal mousie toy. There's an Etsy store in the making in all this.

It kind of hurts a little, which I didn't expect. My scalp feels like I wore a heavy pony tail for far too long. It's tender. I will find out soon whether that will outlive my hair, or will it end once the scalp is bare.

For the first time since the infusion, I was willing to drive myself somewhere. I went down to Marshall's and Ross, looking for a knit beanie. The only one I could find, at Ross, was a very autumn-looking maroon, and made of acrylic. I need to wear it tomorrow to contain my hair, because how many Rotarians will want my hair to fall into their lunch, really? But afterward, I'll have to drive down to REI, and see whether I can get a true hipster beanie in a summer-weight cotton. I'll need to have a few to rotate through over the summer, to match my outfits. I don't think anyone will mistake me for a hipster, no matter how cool my beanies are.

Curb Appeal

Inspirational song: A Day in the Life (The Beatles)

We viewed a different sort of house today. Instead of being up in the hills, we were down in the flats looking back at them. Bland exteriors (or overly builder grade, really) hid serious potential inside. Two ten year old townhouses, less than a block apart, were surprisingly well-appointed inside. They came with ready-made entertainment, as each had picture windows in the back overlooking a lacrosse game playing this afternoon. I feel like maybe these houses were more for families than my clients’ plans include,

The first home was a single-owner setup. It was built in 1987, and hadn’t changed since Grandma moved in. In fact, as I had arrived first and opened the door, those were the first words my old friend spoke: “Is Grandma home?” (For the record, the house was completely empty, and we could see where the furniture had sat for 30 years.) As houses of this vintage go, this one was spectacular. It was enormous, and it was seriously dated. One of the clients and I could see massive potential. The other client (the one who went to high school with the Mr) could only see the 80s.

The last one was in a great location, but wow was it disappointing inside. It was much cheaper than the others, and it showed. For real, square this in your head: around the edges of the city of Boulder, up the foothills or out toward Celestial Seasonings, a price tag of $740,000-850,000 gives you a house that needs a total renovation before habitation is possible. One was just full of sadness and dark corners, the other had renters who were taking advantage of grow laws, and not caring well for the house they are renting.

It’s going to take me days to recover from this level of energy output. I hope I can sleep late in the morning and forge some new spoons.

On Tour

Inspirational song: Milkshake (Kelis)

First full day of summer, and I wore a long sleeved spandex undershirt and a thick green sweater. Sure, we spent the majority of the day in the mountains, but I was okay dressed that way down here in the flats too. It’s cold as snot in my house tonight, and there’s no way I’m gonna turn on the heat. I’m going to sleep so well tonight. It will be in the 90s by next weekend, so I’m loving this weather while I can.

We ended up touring four houses in the hills. Two were kinda meh. One was a stinky pot horror show. And one was so beautiful, I wish we had been ready to write an offer on the spot. We weren’t, and honestly, I’m much happier being on sabbatical still. Even so, this would have been a great place for what they were needing. We will keep watching things, and maybe by the time I’m actually ready to go back to work for real, we will have found the right house.

I felt a little unprofessional wearing a ball cap through all of the showings, but hair loss started in earnest Friday, and the cap was all about containment. I still have a full head of hair, for the time being. A handful of threads come out every time I touch my head. I'm definitely going to be bald by Independence Day. Just in time to have the additional cooling opportunity.

Carpe Diem

Inspirational song: It's Not Easy Being Green (Kermit the Frog)

This evening, while introducing myself to one of my daughter's friends, on the occasion of her birthday party, I raised my arms and quipped that I was ultimately responsible for the events of the day. She answered back, "So happy birthday to you too." You know, in a way, she was right. That experience was such a difficult medical obstacle course for me, all those years ago, I could say that my life re-started that day. I've been on bonus time ever since. Happy birthday to both of us, kid. Today marks one of the most important moments in both of our lives. I'm so glad I got to spend several hours of the day with you.

It was nice to see her whole circle of friends tonight. I have a passing friendship with most of them. But it was also nice to be able to celebrate and then step aside and let her be her own person with her own peer group. I always try to be "the cool mom," which means being funny and not judgy, and also means giving her plenty of space without creeping on the fringes all the time.

We stayed at the party for about two hours. I came home early enough to blog and get a full night's sleep. I actually have to work tomorrow. I had intended on staying on sabbatical all the way through to finishing chemo and starting radiation. But an opportunity fell in my lap, and I have no choice but to follow through on it. It might not end up being anything. It might be enough to cover the entire rest of my catastrophic cap (out of pocket limit) and have enough left over to replace my eight year old, busted up, saggy mattress. We shall see whether this turns into real work or just a pleasant drive in the canyons.

This is as much as chemo brain will let me write tonight. I hope these last few nights have made some semblance of sense. When I proofread, the words just go sideways anyway. If you can't handle rambling nonsense, you might want to give me a rest and pick it up again in October or so. It's not gonna get better until then.

Your Mileage May Vary

Inspirational song: I'm Walkin' (Fats Domino)

Whatever I expected it to feel like, so far none of it has matched my ignorant expectations. I mean, yeah, I'm tired. I got that out of everyone else's stories. But the stories failed to express "how" or "why" one is tired--that feels utterly alien. I'm not just tired because meh, fatigue. I'm tired because it feels like every single cell in my body is doing something at all times of the day and night. I'm literally humming like a machine. If my eyes didn't convince me I haven't moved, I would swear I'm in constant motion. Sometimes I feel like I'm twisting and floating on air. Sometimes it's more like zooming down a river through class four rapids (but without getting wet or bashed up). My muscles get a little shaky and weak, like I've been sprinting. And overall today, I'm as tired as if I walked all the way from here to Yuma, straight through without a sit-down.

I also wouldn't have thought that I'd have such a runny nose. No one mentions that. I'm sure they don't think it's important, and it's probably not. But day and night, since around day three, my nose has been alternately runny, stuffy, or bloody. Perpetually bouncing between those three states. The one part that concerns me is how quick it is to bleed. Am I not supposed to be extra careful not to break my skin everywhere else, for fear of infection? Didn't they tell me not even to start flossing my teeth on the regular, for fear of mouth bacteria getting into the bloodstream?

There's other stuff that I might have read, and imagined I'd either skip or not notice it. I'm noticing heartburn. I never have heartburn anymore, in my regular life. Digestion got pretty good for me years ago, when I changed my diet and got zealous about keeping my house and kitchen safe. So now during chemo I get heartburn over something spicy, like a Jolly Rancher candy. Or water. Almost every food I eat ends up giving me regrets. I had tomato soup for lunch, and it was okay, but all I could manage for dinner was a GF hamburger bun I found in the back of the fridge. I toasted it in the oven with a slab of butter, and all I could taste was salt. Now I feel like I had a big bowl of ghost pepper chili. I'll be sleeping on a wedge and hoping the night is short.

Pond Envy

Inspirational song: Sheena Is a Punk Rocker (The Ramones)

It was a big, beautiful day, and I made it through the whole thing! This was my target date for a long time. If I could just feel okay after chemo long enough to go to the Rotary 100th year celebration party, I would be good. Then I can start getting nauseated and have my hair fall out and on, and on, and...

I did things a little out of order. I got sick early on. I chopped off half my hair, sooner than I really had to. But I made it back to upright, well enough to go to Rotary two days in a row. I didn't stay long enough to enjoy the slideshow and the presentation of all the cool stories from our history. The venue was delightful, and I would love to rent it out someday in the future, if I ever needed a stunning event site (and had a big budget). I spoke with a handful of my friends, but my small talk tank was mostly empty. I sat and got to know a spouse who I'd rarely encountered before. And both me and Mr S-P got a serious case of pond envy. My pond is the size of a narrow, deep bathtub. Their pond was as big as a city house lot, and was fed with a diversion from the St Vrain river. Crazy beautiful.

Yesterday I had Kid the Younger come over, and told her that I didn't care how it looked, really, I was just ready to have the short hair. Her hair-cutting style is unique, so it isn't quite as professional as if I'd paid someone to do it, but that wasn't what I was looking for. When it grows back for my birthday, then I'll pay people. For now, I wanted to play. We did The Cut, the Soccer Mom, the Karen, The Let-Me-See-Your-Manager, whatever you call it. It was just a way point, and it was even less flattering on me than I expected, and I had low expectations. Kid's portrait photography is not nearly as kind as her sister's better-trained eye, so I will not be sharing those pictures. Then we moved through other phases. One was The Emo. All my hair was pushed forward over my face (with the back shaved short already). From under the mass of jagged bangs, I moaned, "My kids don't understand me." Kid and her friend who had joined us appreciated that.

From there, we transitioned through J-Pop or K-Pop, depending on which Pacific Rim nation's boy-band dance music you wanted to compare my style to. Finally, getting tired, we did a long pixie. I couldn't recall at the moment who I was going to ask it to come out like, but eventually (after they left) I remembered: Halsey. I most definitely do NOT look like Halsey, but it was an admirable goal. A lofty goal. An unattainable goal.

Again, her photos made me look like I needed to be braless in a housecoat, standing on my front porch, waving a cigarette with a long ash, shouting to passing cars in authentic Okie gibberish. They should not see the light of day. By bedtime, my natural wave was making me look pointedly like Suze Orman. I kind of finger-combed it and vowed to start over today. After a wash and a handful of mousse, I just tamed it under a scarf with a top-bow. I figure I need practice there too. So I ended up a little rockabilly, a little punk, and a lot (LOT) older than I started out three weeks ago.

Two pictures are completely, utterly without makeup. One has a little. Be kind. I won't be putting a lot of effort that direction until, oh let's say, well after Labor Day. Gonna be pale and gaunt, and still pleased to be pushing forward through it all, even if I'm not smiling.

The State of the Industry

Inspirational song: Contraband (Mad Caddies)

I had a strong day. Not like it was last Tuesday, when I was all go-go-go to Rocky Mountain National Park for the afternoon. But I got up at close to a normal time, had a cup of mostly hot chocolate with a little coffee, and walked around the back yard a little, finally seeing the rebuilt pond in person. I showered, dressed, and got a ride (because I'm not stupid) to the Rotary day out. When I signed my name on the list, I was only the third person brave enough to break the stereotype about Rotarians being a bit conservative in their opinions on businesses, to go visit the pot shop that recently opened across the street from the Super Target. By the time today rolled around, there were seven of us ready to visit a 21st century business.

I was a little late, because I'm still moving slowly, even though I'm moving. I got signed in at the front desk, and was then sent over to the conference room where everyone was sitting down to lunch. There was quite a bit of gluten in the spread, but I wasn't super hungry, so a pile of the salad and garlicky beef was plenty for me. It was the first real "meal" I'd had in a week. I was quite full and happy. We sat around the conference table, asking all sorts of questions. It had been burning in me for weeks to learn about the current state of banking for the cannabis industry. It has come much farther than I imagined it had, but there were still high hurdles. They said they can take some credit cards, but it's expensive. They can deposit their money in a bank account, but it's not FDIC insured. They still pay all the same payroll tax expenses and unemployment insurance and everything, but their costs associated with employees are not deductible. The rest of the group asked a ton of questions too, from informed medical questions to ones that revealed people who had never strayed into counter-culture as a kid. A few questions sounded a little slippery-slope to me, but the person asking didn't seem to have malicious intent behind them.

After lunch and discussion, we got up for a tour of the facility. I had never seen a medical sales room before. It was interesting. Apparently a lot of the products are similar, but more potent (and I forgot to ask whether they were a better value). Then we saw the recreational room, which was pretty big, all things considered. They showed us pre-rolled joints, and let us sniff them. One of them smelled almost like candy. We also looked and sniffed a bud (still in the jar -- we weren't actually touching anything).  The facility was entirely different than the other one I've seen. The other was in a historic brick building that was my favorite restaurant in the 1980s. This was in a strip mall and it was industrial and open. Concrete floors and modern walls, open to the HVAC above.

The budtender was charming and knowledgeable, and we asked more questions of him. Everyone left feeling like they had learned. I stayed behind, for two reasons. One, I had been given a ride, and forgot my phone at home, so I didn't have a way to let him know we were done. Second, several people at the cancer center were highly supportive of using this to battle nausea and decreased appetite. So I kept talking to them, and decided I wanted a chocolate bar. For two days, I have been craving chocolate, even when I felt like my muscles were liquefying in a numb skin sac. I read labels, and had to send back several things that were either outright not gluten free, or made in a facility that couldn't guarantee no cross-contamination. I was very surprised to realize that "coffee and doughnuts" didn't actually have any donut in it. Just milk chocolate, coffee, and cinnamon sugar. And THC. Did I realize it was THC and not CBD when I bought it? Nope. Will I continue to use it, as I go through chemo? Probably. I have a CBD tincture that I can mix with it. Half a dropper of oil under my tongue, followed by a half a piece of chocolate to make the taste go away. It might work as I go more and more days in a row thinking that food has lost all of its lustre anymore. (Because it has.)

Refilled

Inspirational song: Gimme Some Water (Eddie Money)

I woke up at 0145 this morning, seriously regretting my life choices. I was awake and in pain for hours, before I finally conked out after 5 am. I slept a couple of hours, just long enough to be able to skip all talk of the ER, and head to my cancer center for some attention. It was the first time I had escaped the confines of my house to any extent (even standing on the front or back porches) in five days, and it felt like I had been in a time machine. My pink roses were blooming in profusion, many of them well spent, and when last I had seen them, they were only barely budding. There were new flowers from the clearance rack sitting on my front step, that I didn't recognize. And it just felt like time had passed without me.

They didn't have the wheelchair available when the Mr drove me up to the medical office tower entrance, so I had to take it in stages, and sit on a bench while I waited for him to park and bring up my stuff. I sat close to the reception desk so I could mumble at the office person how much I needed help. They were totally fine with me arriving two hours and twenty minutes early, and no one yelled at me for needing immediate attention. The nurse saw how slowly I was walking when they called me back, and asked whether I needed a wheelchair. By that point, I'd already done the exhausting part, and I just staggered out the last few steps. I paused in a lab chair to let them draw the blood I was supposed to offer up this morning, and based on how puny I felt, they said they would send it down to the hospital so that it would be processed sooner. They set me in an infusion chair, and asked me key questions about what was going on. I told them everything. I probably gave them TMI, but I wasn't exactly clear headed. Who knows what I said?

They started me with a liter of saline, and let me nap through the two hours it took to administer. The Mr had gone to drop off his car for an oil change, and returned right as I was draining the last of the bag. My blood results came back okay-ish. One nurse came to me and started with, "You're not in trouble, but..." and asked whether my second Neulasta had been knocked loose also. No, I assured her, it stayed on and delivered the dose. Apparently my white blood cell counts were at the bottom of the okay range, when they expect them to be much higher with Neulasta. I wondered aloud whether the troubles I was having were because of the lupus, and they agreed it might be a factor. We discussed over the counter medications to address some of my messier problems, and they called in a prescription for a different anti-nausea drug. Before I got out of there, they asked if I had time for another half-liter of saline, and I couldn't say no. We told ourselves maybe we would be better off if we just expect to come in for hydration at least once per cycle.

I still have a headache. I'm still weak and tired. But I'm better prepared to treat what's wrong, and I know my options. It still sucks, and I didn't talk to them about the heartburn I have now. The worst is past, I think. At least the worst of not knowing and not feeling able to fix it.

Crashed

Inspirational song: Should I Stay or Should I Go? (The Clash)

The finish line is so close. 12 hours from now, I have a scheduled appointment. No extra wait times, no bigger copays. No getting the stink eye as if I'm drug seeking. No getting ignored for hours when I can least handle it. I hate going to the ER. It has never been a happy experience, just awful waits, even when I came in via ambulance. I don't have the stamina.

A few hours ago, I convinced myself the benefits outweighed the pain. I asked the Mr to help me dress, and I was ready to subject myself to sitting up in the car and in a wheelchair for some indeterminate amount of time. Then it started raining, and some jackass hit a parked car a few houses down, and took off from the scene of the accident. The Mr got distracted calling that in, and he stayed with the cops and tow company for an hour. He just returned, having found a piece that identifies the hit and run vehicle as a GM truck of some sort (Silverado or GMC).  While he was gone, it started absolutely pouring, and I let the weather talk me out of going to the car.

I know they are going to yell at me at the cancer center. I should have gone yesterday. I should have gone this afternoon. I just couldn't face the guaranteed miserable experience. So instead I had one more Tylenol and a few solid sips of water, and I'm going to pray I sleep through most of the night. I might go in a hair early to my appointment, and get treated sooner. That's the best I got right now. The rest involves keeping my head down and waiting for the migraine to recede.

I Really Tried

Inspirational song: Pride (In the name of love) (U2)

Ah, you should have seen me. I was so proud of myself. I was showered, and my hair was washed, although I had to lie down for over an hour after I finished the shower. I put on "clothes" of a sort (ratty old gray sweatpants and a neon yellow tank top that emphasized the unsettling differences between my left and right sides, post-surgery). I had been brave enough to try some plain white rice earlier, so I thought, hey, if I pour beef broth over some of it, it will be kind of like soup. For the record, that is not how it works. Swanson's beef broth is useful in recipes, but straight up in a bowl? Yuck. But I gave it a solid effort. My stomach is still rolling.

But the best part? For the first time since Wednesday, I was sitting up in my chair. I was so happy! I dedicated about four minutes to that failed soup effort, and then I went and got a grape popsicle, which is supposed to help with nausea. I got three bites into it, and my stomach cramped hard. I pitched the popsicle to the counter, and went back to my usual routine. I've been back in bed ever since, including having my head all the way flat for most of that time. For a few minutes, I remembered what it was like to be me. And then it all went away again. Tonight is going to be Tylenol PM, I think. I still have the headache, and I'm allergic to some aspect of the port. It can only help me.

I am so grateful that the Mr is an adult who is totally content and capable of entertaining himself while I'm going through this. He puts no demands on me, other than that I continue to drink water and attempt other forms of nutrition periodically. There are people who go through this with young children. Children have trouble understanding boundaries, that when mommy feels bad, you have to stay out of her room. You can't have extra-loud fights with siblings, you can't crash stuff in the house, and expect to get away with it. Spare a kind thought for parents of young ones who have to go through chemo while still being mommy or daddy. My heart aches for those people, who can't just hide in their room with a pile of cats like I have done.

This Is My Life Now

Inspirational Song: That Time of the Night (Marillion)

The word of the day is not for the weak. Or rather, in this particular case, it is what is making me weak. Today’s key word is “peristalsis.” My carefully cultivated microbiome is a thing of the past. I have been in bed pretty much straight through since Wednesday night, other than the dozens (++) of trips to the bathroom and a couple short showers. I tried once to walk to the back door, to see how the Mr had re-done the garden pond, and I got as far as pressing my forehead to the glass. I didn’t see him, and I turned and went back to bed. Later he sent me a picture. It was the best I could do to see it.

My temperature bounced in the 99s and low 100s. Not enough to go in to the ER. Just enough to feel awful. I slept through the phone call from the nurse who followed up on me, and I didn’t call back, because I didn’t see the voicemail until after hours. I’ve improved to the point where I was willing to consume beverages that had calories (just not very much). I’m still one with the bed, so I don’t know how much of an improvement it is.

I’d like to believe this is just a phase. Once all of my intestinal bacteria are dead and gone, they aren’t going to re-establish and make me go through this again, right? I can only hope. And I wonder how much of the headache is from not drinking coffee. I had cut my caffeine intake, but not eliminated it. I am considering not drinking coffee again until this is over, like in August over.

This can't go on forever. I know that much. I have an appointment to have my blood checked on Monday. That's the farthest I can go without resolving this, one way or another.

Worse

Inspirational song: Rough Boys (Pete Townshend)

I knew it could get bad in a hurry, but this took me by surprise. Headache all day (granted, I didn’t drink any coffee today). Temperature up and down, peaking this evening at the magic number of 100.4 to put in a call to the on-call doc. He said unless it stays high, I can wait until tomorrow to get checked out. Otherwise, it’s ER for me.

I haven’t left my bed to go anywhere except the bathroom all day. This blows. I hope it improves over time.

I’m typing on the iPad, and I can’t add pictures from this device. You probably wouldn’t want to see images from my day anyway. Think happy thoughts for me, that this wave passes quickly.

Off a Cliff

Inspirational song: Float On (Modest Mouse)

And there we have it: the first of many barfs for the next three months. And it was going so well, too...

I did pretty well over the course of the day. I cleaned the kitchen, sprayed bleach cleaner all over my bathroom (waiting until after the replacement Neulasta injected before showering, so I could properly wash my hair for the first time in a few days), and I made a double batch of banana bread with a bunch of bananas that went speckly way faster than I expected. I felt good, but I sat down often. I didn't eat until mid-afternoon, when the bread was done. I tried to lie down and nap, but I kept getting phone calls, including from the chemo nurse who went through her check list to see how I was. She encouraged me to eat something with protein, so I gave up on nap and tried to make a little bean and cheese burrito with a gluten-free spinach and kale tortilla I had made a few days ago (that honestly did not turn out well). I kept getting more and more fatigued, and a few times I felt just weird. I felt kind of floaty while I tried to nap, and I felt like bits of my body were periodically getting squeezed from the inside, like my jaw, the breast that was cut off, and my belly.

Then the gang came here for D&D night. I didn't try to sit at the table. I had them spin my great-grandmother's rocker around to face the table, and move my ottoman to put my stuff on. For the first time all day, I was ravenous, and I went through a bowl of chips and salsa. I watched my daughters drink some wine, and I thought, "They said if I want some, try it." So I got a small glass. After less than two ounces of it, I started to feel awful. The pressure in my head increased, and they said I went vivid red. My head throbbed. I ran to the bathroom, and assumed the normal, daily position. I then started evaluating my surroundings. I was very pleased to learn that the insert to my trash can was sealed, not vented on the bottom like I feared. Everything, and I mean everything, I consumed has now left me. I had just enough stamina to clean up after myself, so the kids didn't have to. I then asked my daughter to help me remake the bed after washing sheets this morning, and I climbed in. They allowed me to continue to play the game from bed, and my mighty half-orc barbarian brought the pain to the horde of skeletons we fought. They just had to wake me up when my turn came around to swing.

I stayed in bed from about 8:30 on. I had to have two additional blankets thrown on top of me, and yes, I did check my temperature (a very normal 97.3). I can report to my mother than the smiley face bell she bought for my bedside was a success, and it brought my younger daughter in to add the fuzzy blanket when I needed it. After everyone left, and I had another wave of nausea, the Mr encouraged me to take a few drops of the tincture that should alleviate some of it. Fingers crossed that it keeps me asleep all night. I didn't take much.

I banked a couple of photos for nights like this. I get the feeling I should have saved more. Here is a pastoral scene with digging and irrigation equipment.

Where You'd Rather Be

Inspirational song: Baby Driver (Simon & Garfunkel)

The Neulasta commercials tell cancer patients that the day after chemo, they would much rather stay at home, rather than going back to the doctor to get a shot to boost their white blood cell counts. Yeah. Nice theory. Wrong on two counts so far. For one, I had to go back anyway, to get a replacement Neulasta after I bumped into my bathroom door on the way out of the house (more on that later), and for another, I feel amazing today. Why would I stay home now, while I feel good, when the floor will most likely fall out from under me two or three days from now? They gave me an anti-nausea medication that will last through Wednesday night, maybe Thursday morning. I'm taking advantage of the reprieve. I attended Rotary and was all smiles. I didn't eat as hearty as I might have otherwise (I'm already noticing that the spicy Indian food they served today was a little hard to handle), but I was alert and in nearly no pain. After stopping back in the infusion room on the way home, I met up with the Mr, and we took our annual trip up Trail Ridge Road in Rocky Mountain National Park. We wanted to go on opening day, but we just missed it over the weekend while he was at the rally.

As for the replacement Neulasta. Holy crap. That was quite an error. I have a rack hanging over the bathroom door, and it's full of swimsuits for the hot tub. The door doesn't shut all the way unless you really slam it, and unless my house is full of strangers, I don't try to close it. When I showered Monday, I got lazy and left my fuzzy bathrobe hanging there too, so the door didn't open all the way either. I was super careful with the cyborg-machine in my arm yesterday, all last night in bed (even when the flashing light lit up the room, making me wait for thunder), and I kept it dry in the shower this morning. I dressed, I pulled on a light cardigan, and after doing my makeup, I walked out of the bathroom. I barely brushed the door with my right arm. But I hit that thing just right, and the door didn't give with all the junk hanging behind it. It knocked the box loose, pulling the little catheter out of my skin. I had to go back and get another one, and before they got it out of the medication closet, I asked, does insurance cover this? The financial advisor was there, and she said yes, her copay will cover it. Thank goodness. If I had to pay out of pocket, the full amount would be $13,000. Ouch! I bumped it slightly getting into the car on the way home from this, and swore to myself that if it came out again, I wasn't going to tell a soul. I'd rather just not get the medication and be low on white blood cells for a cycle than to risk paying out of pocket for a third strike. Tell me why I couldn't have planned on going back today for an actual shot? I might next time, to make it easier and cheaper on my insurance, and lower my risk profile.

Now, what I really wanted to write about today: my pretty ride up along Trail Ridge Road. As I write, it's still June 11, but just barely. Keep that in mind when you see how much snow is up there. The road opened more than a week later than it usually does, which is traditionally Memorial Day weekend. The park itself was super green at the lower altitudes, and as we drove up, the aspen leaves were younger, lighter, and sparser the whole way up. We eventually came across snow cuts on the side of the road once we were pretty high, and they started small. From my side of the car, they appeared to be one or two feet tall at first. Then they were as tall as the car. Then we passed a truckload of Texans hopping out to stand against a snow cut twice as tall as they were. By the time we got to the highest parts of the road, the snow towered over the cars on the road. It was lovely up there. It spit tiny snowflakes at us at the top, but nothing measurable. The visitor's center was packed, even though the bathrooms were still closed. The hiking trail to the 12,000 foot point was still under house-deep snow. I found a hand-painted magpie Christmas ornament that screamed my name. We got a couple of hot chocolates before heading back down. And we saw some baby elks above the tree line, and a handsome elk down low who had a big, velvety rack of antlers. I can't tell you how wonderful it is to be close enough to drive up there on an afternoon whim, and be close to all of this beauty. It was totally worth everything we went through to land in Boulder county once the Mr's military service was over. Totally worth it.

Final note: Rabbit is sitting on my bedside table, periodically tapping the Neulasta. Oh, Rabbit, no...