Wednesday, November 7, 2018

Last round.

Throughout my life, I always believed that I could never, ever do chemotherapy. The idea of being poisoned frankly terrified me and I have a pretty intense needle phobia. Not the "I have to look away" kind of phobia, but the "I'm going to lose my damn mind if you stick a needle in me" kind. The kind of phobia that makes me guarantee that I will never get a tattoo or have acupuncture. The kind of phobia that made me choose natural childbirth just to avoid a needle in my back. And yet, somehow I did it. Because when it came right down to it, I didn't like my odds without it. With my particular cancer, the 40% chance of metastases if I skipped chemo seemed little better than a coin flip to me.
At my chemo center, like many others, you get to ring a bell when you are finished. After having my port accessed, we met with the oncologist who was all smiles. He shook my hand at the end of our visit and told me to ring that bell as hard as I could when I finished and come back to see him in three months.

And then, the drugs and memory loss kick in. What I do recall is that while my husband was off fetching food for us, they brought around lunch and I had a turkey and cheese sandwich and a bag of chips. Things get fuzzy after that. He went to the cafeteria, he told me later, and called several times but I didn't answer. So he came back to the chemo room, said he'd call again from the cafeteria to tell me what my choices were. I have a vague memory of asking for a muffin. He called several times again and when I finally answered, I apparently wouldn't say anything. He chose for us, and came back with a muffin, a grilled cheese sandwich and fries. He tells me I offered him a bite of the muffin and then when he turned back, I'd devoured the remainder of it and was taking huge bites of the sandwich. And I ate most of the fries. Zero memory of any of that. I told him I remembered the first sandwich and chips and he said, "No kidding, I had to brush a bunch of potato chip crumbs off you." Yeah, don't remember that either. Maybe it was my body's way of calorie-loading before my taste buds went to hell.
Because my taste buds definitely turn on me. Starting about Sunday evening, everything tastes foul. And smells bad, too. My husband decided to make something involving onions and black beans, I think, and I was gagging just at the smell of it. And that was even with him cooking it in a crock pot in the garage. Weirdly, sweets taste especially bad to me. Fruit is okay, but things like candy and cookies are repulsive. Which is really saying something given my wicked sweet tooth.

But before that, I felt okay. The neulasta on-body injector hurt more this time and I'm not sure why. See that little cannula? That is the thing that was sticking into me for 27 hours before it started infusing. I can't tell you what a relief it was to peel it off on Saturday.
Since then, I've been mostly taking it easy and trying to medicate ahead of symptoms like nausea and bone pain. On my worst day, yesterday, I just let myself lie on the couch all day and watch Netflix. But today, I feel like I'm starting to climb back out of the pit.
The little plaque says:
"Ring this bell, three times well, and celebrate this day. 
This course is run, my treatment done, now I am on my way."

Well, it's not actually done. I have surgeries ahead and years of endocrine therapy, and I know there are no guarantees. But I am very thankful to be done with the chemo part. And that plaque is not the boss of me - I rang it four times, once for each round I completed. And yes, I DID clap for myself.

Sunday, October 28, 2018

On the upside...

This chemotherapy round was, as I expected, harder than the two before. I read somewhere the expression "chemo-tired" to describe the surprisingly intense fatigue. I often feel like I have weights attached to me and I'm slogging through mud. Between that and the swelling of the nerve-damaged foot, I've been fairly sedentary. It's a good thing I like to read! At the beginning of the year I had set myself my usual Goodreads challenge of 52 books. Following my mastectomy in the beginning of June, I spent more time than I care to think about lying on the couch. Watching movies, sure, but also reading. I hit my goal in early July.
And have not slowed down. I have read, for instance, 11 books on breast cancer. And another half dozen on nutrition and health. But I am careful about sources, and so I have read a few books on the scams in medical care. One quote stayed with me was from a former editor of the Journal of the American Medical Association, who said, "Of all the ghouls who feed on the bodies of the dead and dying, the cancer quacks are the most vicious and the most unprincipled."

I've been taking advantage of the library's willingness to send books I request from any branch in the system to my home library, and have gone off on tangents exploring cults, politics, autobiographies, evolution, and minimalism. I love walking into the library and walking out with the latest stack they are holding for me behind the counter.

But it's not all serious non-fiction, I've also read novel after novel after novel. Some silly, some gripping, all helping me pass the time. Most all, anyway - once in a while I get a chapter in and decide I'm not enjoying the book enough to continue. No matter, there's always another in the queue. So here we are at the end of October, and I just finished my 94th book for the year. I have another week of time off work for my next chemo round and later, ten days off following my scheduled ankle surgery - I think I will easily be able to hit double my original goal by year's end.

Wednesday, October 17, 2018

Weekend drive.

This actually happened the weekend before chemo, but I didn't have time to post it. I'm still crippled up because of my foot, so we decided to take advantage of the beautiful weather and go for a little drive down some back roads.
I loved this weathered but taken-care-of log cabin. Not enough windows for me, though - I need light!
If I had a small farm, I'd really have to give serious consideration to getting a pony. How sweet is he?
Several of the churches we passed had old graveyards attached to them. If I'd been up for walking, I'd have gotten out to explore.
Sadly, the Who Cares God Cares Restaurant was not open for business. I so wanted to go in and order deviled eggs.
Instead, we settled -very happily- for a grilled cheese sandwich (Gruyère, Gouda and avocado ranch dressing on sourdough) with sweet potato fries and a couple of pints at a beer garden. The sandwich wasn't actually on the menu, but if you know to ask, they'll make it for you. I'm still in the phase of post-chemo where things taste disgusting to me, but I'm looking ahead to venturing out again as soon as that passes.

Saturday, October 13, 2018

It’s poison, I tell ya, it’s poison!

I'm one of those people who needs to know everything I can about my own healthcare. I have patients who tell me, "My doctor put me on a new medicine. It's a white pill. I'm not sure how many milligrams." That just blows my mind. How do you not know what medication you are taking? I'm home now after my third chemo round and waiting for the neulastin to infuse tonight. And bracing myself for the string of sucky days that will follow. In the meantime, I'll give you a lay-person's overview:

My own particular chemotherapy regimen is just two chemo agents once the pre-medications (antiemetics, corticosteroids, anxiolytics) are in. When I first told my younger son I'd be on Cytoxan and Taxotere he said, "Wow. Kind of scary when they include the word 'toxin' in the drug." Cytoxan is a trade name for cyclophosphamide and was named because it's a cytotoxic drug. Cells go through a cycle of growing, dividing (mitosis), resting, and then starting over again. Normally, cells know when to stop that silliness, but not cancerous cells. They are marked by out-of-control growth, rapidly cycling through the phases over and over again. That's where chemotherapy comes in. Cyclophosamides are alkylating agents that alter the cell's DNA and slow cell growth. They act on cancer cells particularly during their resting phase, leaving them unable to replicate. The more rapidly a cell divides, the more useful a chemo agent is. The downside, of course, is that they also go after other rapid-growth cells like those in bone marrow, hair follicles and the mucous membranes of the mouth and gut. Yay.

Anyway, there is an interesting history behind the development of these drugs that goes back to World War I and the use of the first chemical weapon, mustard gas, by the Germans. It was nasty stuff, able to be absorbed through the skin so that gas masks weren't adequate protection. The troops hit by sulfurous clouds of mustard gas liquid would, at high enough doses, become blind and develop ulcerating necrosis of the skin. If inhaled, hemorrhagic pulmonary edema developed. As you can imagine, death from mustard gas was a miserable affair. The soldiers who didn't die went on to experience nausea and vomiting, hair loss and suppressed immune systems. Sound familiar?

So during WWII, Nazis again used mustard gas. Because screw the Geneva Convention prohibiting chemical warfare. A couple of pharmacologists thought, "Hey, if this stuff can kill people, maybe we should use it to fight cancer!" You can't make this shit up. And it did work, to an extent. Unfortunately, it was also near-lethal and only temporarily effective. But chemotherapy was born and nitrogen mustards like the Cytoxan being infused into me every three weeks are still being used.
And then there is the Taxotere, one of a group of chemo agents called taxanes. The first was paclitaxel, derived from the bark of the Pacific yew tree (the genus for yews is Taxus, hence the name) in the late 60's. Apparently it's a relatively rare tree, and so twenty years of research later, another agent, docetaxel, was synthesized from the needles of the more common European yew tree. Docetaxel is more effective than paclitaxol but also more toxic. That's why on my first round it was infused very slowly to make sure I would not have a reaction to it. Taxanes work by binding to the  microtubules which control the communication within cancer cells, causing mitosis to be inhibited.
So there you have it, conifer needles and sulphur mustard. Kind of sounds natural and outdoorsy, doesn't it? Okay, no, no it doesn't - it is definitely no picnic. But with any luck the combination of a microtubule inhibiting taxane and and DNA-disrupting alkylating agent will do its job on any rogue cancer cells in me without taking me down in the process.

Saturday, October 6, 2018

Who are the people in your neighborhood?

We live in an old neighborhood with a range of houses, both in style and price. Little post-war ranchers like ours, old brick houses from early in the last century, newer stone houses. I love the variety and much prefer it to living in a cookie-cutter suburb. But this house made me gasp when I saw it. We were on our way to meet up with two other couples right after it had been painted. It was the topic of conversation when we got to the brew pub: "My God, did you see that aqua house? What were they thinking?" and "It's too bright even for Jamaica!" and "Whoever owns that place HAS to be colorblind!" On the one hand, they have the right to paint their house whatever color they want. But I had to feel badly for the folks across the street trying to sell their house. Good look with that now.
My theory is the owners got stoned one day, found the paint on the clearance shelf, and just went nuts. Why else would they slap paint onto parts of the window frame and even the glass of the windows? And the benches are a weird mix of sage green, aqua and some dark green, applied apparently at random. There's also a bright blue bench on the other side of the house.
My favorite thing is that they've chosen to accent with bright yellow, including a Hotei statue (what some people call a Laughing Buddha), guarding the steps alongside a tiny American flag. I'll give the home's owners this - it's eye-catching. No one is going to miss this house. Except, of course, my color-blind husband. It looks normal to him.

Sunday, September 30, 2018

Even chemo doesn't stop time ticking on by.

Is it just me, or is it a little creepy that The Google noticed my birthday on its homepage? At any rate, whether I wanted to notice it or not, another birthday rolled around. My husband's did, too, during my first round. We felt pretty uninspired for both.
This is from my 5th birthday. We'd gone to Panama that March and my grandparents' housekeeper, Josephina, had made us kids traditional Panamanian costumes. That trip made an indelible impression on me. I was 4 ½ at the time and I remember walking in the jungle with my Granddaddy and seeing spider monkeys and looking through the open air market with my Gangeen and asking what the turtle eggs were. There was also a gardener named Balbino who was stung by a scorpion while we were there. It was an interesting trip. Anyway, in the photo, I'm the one looking ambivalent on the left. I guess I've always had mixed feeling about birthdays. My big sister looks unimpressed but my little brother was totally in the spirit! He looks like he's about to break into a flamenco dance.
Friday when I was feeling semi-human again, my younger son called and said he had the stuff to make bottle terrariums if I thought I'd like to do that. He came over bearing a couple of whiskey bottles, pea gravel, potting mix, and coconut coir. We scouted around in the back yard for moss and small plants, then assembled the terrariums, adding an earthworm he'd dug up to each. When we were done he said, "Yours looks good, Mommle."  It reminded me of projects we used to do when he and his brother were young, but with him in the parent role. Mostly, though, I love that he'd come up with something he thought might lift my spirits.
Later that day, after he'd gone to run errands, he met up with me and my husband for a pint at a local beer market. Hard cider for him, an IPA for my husband, and a pale ale for me. The weather was great for sitting outside - very lightly overcast, breezy, and in the 70's. (Incidentally, while I like beer as much as the next person, questions about it don't make me get defensive and say over and over that I like beer, become belligerent, make up pretend drinking games, or sniff like I'm coked-up. Just saying.)
On Saturday, my birthday, we let Hödr in for a bit to doze in a chair while we had asiago cheese bagels and lox for breakfast.  She was so happy to be inside she didn't even harass us about not getting any lox.
The foul taste in my mouth was completely gone and my appetite had returned with a vengeance. I wanted carbs and fat. I had a bowl of lobster bisque followed by fettucine alfredo with chicken and spinach. There's a freedom that comes with knowing it's my job right now to eat as much as I can.
It was just blissful to sit outside both days, soaking in the warm air and enjoying the taste of things again.
We watched a silly movie that night - "Heaven Can Wait" - a ridiculous 1970's movie I'd missed when it came out. Which is odd since my Dad was a dyed-in-the-wool Rams fan (see what I did there?) having gone to UCLA for a year before going to the Naval Academy. Oh who knows, with this chemo brain it's possible I did see it back then and just don't remember. We had a snack of cheese and crackers, raspberry tarts, and champagne. Remember I said I was going to live normally between rounds rather than fretting about the tough times ahead? Well, this is it. Cheers.

Thursday, September 27, 2018

So planning for this round to be better may have been wishful thinking.

I thought if I knew what to expect and how to medicate in advance, I'd do better this round. You know, because I am that capable of warding off bad symptoms through my keen intellect and strength of will.

"Ha ha!" replied the Universe.
I was, in fact, able to ward off the bone pain by taking claritin and aleve in advance and through the first several days. And I'm grateful for that. But otherwise, this round was worse. I'd been warned that the effects of chemo are cumulative and each round is generally harder. Turns out, that's true. This time I had a few really bad days where I did not leave the couch unless I had to. I couldn't focus enough to read, so I've been watching a lot of movies and television shows on Netflix, choosing things that don't require much attention. And this round, I had nausea for the first time. Yay. Thank goodness that among my arsenel of prescription meds, I have bottles of zofran, phenergan, and compazine. And I'm so bloody tired. It's like slogging through mud.

But the side effect I like the least is the weird taste in my mouth. And by weird, I mean putrid. It tastes like something died in my mouth and start rotting. No amount of tooth-brushing or saltwater or biotène rinse takes it away. As a consequence, most food tastes really bad. Even plain water tastes fetid and water has no flavor at all. I would think of something I might be able to eat, my husband would make it for me, and I'd take a bite, gag and throw it away. That was fun for both of us.
I'm climbing up out of the pit now and resigning myself to this happening with more intensity each of the next two rounds. But I'll get through it. Even if I have moments in the next round where I think, "I can't do this anymore." I will finish. And at least I have the view of my yard and feeders and the small rascals who visit them.