Thursday, December 6, 2018

Schadenfreude.

Early in the week, we had a visitor who unintentionally spun me into a very dark place. It started with my answer to a question about eating meat  - I'd said that no, I wouldn't eat mutton barbecue because I didn't eat mammal of any sort. I don't care if other people do, I just don't. He made a joking remark about how he made a practice of abusing his body through junk food and heavy drinking at every available opportunity and yet had never really been sick his whole adult life. Ha ha ha ha! I smiled politely, but I will admit - inside I seethed. I wanted to suggest that maybe it was pure dumb luck that had protected him. So far.

I think, at least on an unconscious level, people delight in the stories of someone who lived a healthy life and then was struck down by disease anyway. It fits our rough sense of justice about people who think (we believe) that they making superior decisions. It doesn't even matter if the person is just doing the best they can to take care of themselves - it still irritates people. The long distance runner who drops dead of a heart attack in his 40's, the vegan who finds they have dangerously high cholesterol, the thin person who develops Type II diabetes. See? See??? And, conversely, everyone knows the stories of the centenarian who attributed their longevity to cigarettes and whiskey. And who doesn't want to think the statistics don't really apply to themselves? But even knowing all that about how people operate, there was something about that offhand jab that rankled. Over the next day, I brooded about it.

By that night, I was unable to sleep much. And I woke up sunk in a misery I can't even quite describe. I've worked really hard to stay away from the "why me?" questions and not to indulge in self-pity over my cancer. But I started yesterday morning wondering if living an active life and eating a healthy diet are all in vain and if there was any real point in continuing to try. Any of it - diet, exercise, endocrine therapy, visits with the oncologist, follow-up tests. I spent all of that morning and most of the rest of the day lying in bed, tears flowing like a freaking water faucet had been turned on, and feeling nothing about my life except despair. Not scared, just lacking any motivation to get up and keep moving forward.

I know - it's not what you typically read here, is it? Well, I'm sorry. I'm human and I think I got kind of a raw deal. At every step of the way, since I was diagnosed, things have been worse than anticipated. From the sad-sounding young radiologist who called to say he was very sorry, they weren't expecting it but found invasive cancer, to the breast surgeon and medical oncologist who were both certain I would not need chemotherapy, to waking up from my reconstruction surgery with a foot that no longer worked, to the podiatrist who thought the damn thing welded to my tibia would instead be an easy free-floating lesion to remove. None of this leaves me particularly optimistic about what's ahead for me.

Don't get me wrong - I've spent too much time talking with people in the same boat to think I've been uniquely targeted or that other people haven't gotten an even worse deal than I have. Women who have young children at home or who wonder if chemo will destroy their chances of having children at all. People who were diagnosed with cancers that had already coursed through their bodies, setting up camp in their liver or bones. It could always be worse. I know that. But somehow, that's not where my head is right now.

If you're looking for inspiration here about the upbeat person who kept a great attitude as they beat cancer to the ground, I'm not the one to provide that. At this moment, all I know is that I have painful implants where my breasts used to be, a port that protrudes from under my collarbone and hurts when anything brushes against it, and a throbbing ankle I can't put any weight on. Last year I was active and vital and happy, and now a bald, mutilated, crippled reflection stares back at me from the mirror. I don't know how the fuck I got here. Maybe I'm not far enough out of active treatment to feel remotely healthy. Maybe, when I can walk again it will seem different. Maybe if I'm lucky enough to have a period of time without a recurrence, I might start feeling some hope. I'm working on it. But the next time someone suggests to me, even indirectly or in jest, that their own decadence protected them from cancer while I chose the fool's route, I might not be so gracious in my response.

Saturday, December 1, 2018

Update on my left foot.

The night before surgery, we went out for sushi. I'd abstained for the duration of chemo, because it's not safe while your immune system is compromised, and I figured 27 days out was close enough to a month. And then went home to my list of instructions that I could recite by heart after four surgeries in the last six months - no food or drink after midnight, shower the night before and the morning of with antibacterial soap, no make-up, lotion, nail polish, deodorant, or jewelry, no NSAIDS for five days prior.
This time I was able to use my port for the anesthesia. As I watched the nurse unwrap the supplies, I casually/not-casually-at-all asked if accessing a port was more difficult than starting a regular IV. She said it wasn't if you'd done it before. I said I assumed she had and she nodded, then noticed the alarmed look on my face and assured me she used to work in oncology and had done many, many ports. Whew! Then the parade of people who stop in your bay to check in with you - the anesthesiology resident, the surgical nurse, the head anesthesiologist, the surgeon (who said she expected the surgery to take only about 30 minutes). All friendly and kind and seemingly in no hurry at all. The anesthesiologist asked about my chemo and then fist-bumped me when I said I'd finished. He asked if I was warm enough and offered to get another blanket. While he was tucking the warm blanket around me (something I've only ever had nurses do in pre-op), he said, "We want to take extra special care of you because you're a survivor." Made me tear up. He told me I would be under medium sedation and promised I'd remember nothing. In fact, it's a blank from the time they were strapping my arms down until I woke up in recovery.
The podiatrist briefed my husband afterwards while I was still out. The surgery took an hour because nothing goes quite how it's supposed to for me on this cancer journey. Turns out the calcified whatever-the-hell-it-is (pathology report pending) had grown in a weird oblong shape around the back of my ankle and attached itself to my tibia bone. The surgery order had called it a "lesion of unknown behavior" and I guess they were right - that sneaky end run around my ankle was not anticipated and they had to remove some of the bone to get it out. It was putting firm pressure on a nerve and the surgeon said between manipulating the nerve and shaving off some bone, I'd be in pretty serious pain for a few days. Once again, yay me! Incidentally, I texted this information to my older son who immediately wrote back, "It's going tibia long recovery process."

So that ridiculously useless walker they sent home with me after my mastectomy is now my best friend. I've already become pretty adept at hopping with it, in spite of the post-chemo leaden thigh that's having to support me. I took the Percocet as prescribed and discovered that I have not magically become able to tolerate narcotics. I woke up Saturday morning with a migraine and broke a walker-assisted land speed record getting to the bathroom before I got sick. It's ibuprofen from here on out, which means I am learning to tolerate the throbbing pain that happens whenever I get up. But it's not often - I was told no pressure on my foot and that I was allowed to be up no more than five minutes out of any hour for a full week!
I go back for a follow-up on Friday (stitches out the following week) and was told not to unwrap my ankle before then. So I am doing as I'm told - reclining all freaking day long with my betadine-swabbed and wrapped leg and foot elevated. And I'm not happy about it. I'm a caretaker type and it just goes against the grain to be so utterly dependent. Even with my mastectomy, at least I could walk. But I don't want to screw up what was fixed, so I'm begrudgingly compliant. I'm napping, and reading, and watching movies, and breathing. Lots and lots of breathing.

Sunday, November 25, 2018

Thankful.

I left my camera alone and just focused on the holiday this year. My brother, sister, and brother-in-law all came up to celebrate with us. No photos of the meal, but we roasted a turkey and had mashed potatoes with giblet gravy, green beans amandine, sweet potatoes with a maple-bourbon glaze, corn pudding, cranberry sauce and my family's odd traditional plate of cucumbers and olives. At the beginning of the meal, my brother-in-law said they were thankful for me and my younger son added, "And I'm thankful you're not dead." I knew what he meant, but it still startled me.
Before dessert (chocolate-bourbon-pecan pie, mixed berry pie, pumpkin pie and brownies), I cracked out a bottle of bourbon I'd been saving. Some time ago, a local package store was having a bourbon event where every day they'd advertise a very limited stock of small batch bourbons and the first people to text in could buy them. They were all pricey and I wasn't interested. Until I got the email about Burning Chair bourbon from the Savage and Cooke distillery on Mare Island, CA. Run by a former Napa Valley winemaker, the bourbon is finished in old wine barrels. I texted immediately. Because Mare Island is a decommissioned Naval base where I lived for three years as a kid. Having the two siblings with me who also lived on Mare Island made it the perfect time to break it out for a toast. To Mare Island memories, to my Dad who died almost a year ago, to family. And to giving thanks. I was thankful for all those things and for the people who I love and who love me. And you know what? I'm thankful I'm not dead, too.

Sunday, November 18, 2018

My left foot.

You may or may not recall that I woke up from my reconstruction surgery in early August with one numb foot. I was assured it would be fine in a day, and I hobbled on home. But it wasn't. After a few days, I got worried and went to see my primary care doc (This was on the table in the exam room, and the drawing of the louche muscle/bone guy made me laugh out loud.) My PCP thought that a nerve in my thigh had been knicked when they harvested fat for grafting and told me if it didn't get better soon, he'd refer me to a neurologist. I felt like the sole of my foot was a marshmallow and the inside had the intense tingling of a foot that had gone to sleep. It was most unpleasant. At that time, I could not bed the toes on that foot or support my weight with it.
Then, it started to swell up. Fearing a DVT, my primary care guy sent me for an emergency ultrasound. Thankfully, there was no evidence of a blood clot.
On my way out of that building of the hospital, I passed the medical library and saw that the therapy dogs were in residence. I made a quick detour before my next appointment to pet a couple of friendly Great Pyrenees. I saw my reconstructive surgeon the same day, and she thought it was a problem with the nerve in the tarsal tunnel at the ankle. I have had a ... calcification? ossicle? ganglion cyst? - depends on who I ask... as far back as I can remember. As a kid I used to call it my extra ankle. My surgeon's theory is that pressure was put on it when I was positioned in surgery for the fat harvesting and that it was now impinging on a nerve. She referred me to her own podiatrist.
Who said removing the ossified whatsit in my ankle should help but she couldn't guarantee it. Still, I decided to move forward with scheduling the surgery as soon as my oncologist would okay it. The podiatrist sent me for another ultrasound specifically of the lump in my ankle. Two weeks after I finished my chemo, I returned to the hospital for pre-anesthesia testing. I was braced for more blood work, but the nurse said they'd use my chemo labs instead. I'm grateful for even one less stick.
So here I am, with a foot that is very gradually coming back to life. I can at least bend my toes now and walk with only a slight limp. But it's not fully functional and it hurts to walk any distance. And there is a dull ache in my ankle where the bony lump is. It continues to swell up every day - you can see the difference - so it does not appear that it will heal completely on its own. I'm in the countdown for my fourth surgery this year, this one a week after Thanksgiving (and four weeks after my last chemo). I sure don't want to have yet another surgery, but if it allows me to start walking without pain again, it will be worth it.

Wednesday, November 14, 2018

Trust me, I won't always only blog about cancer, but...

I'm in a weird place. I've received hugs and congratulations and even gifts to mark the end of my chemotherapy. Universally, people ask if I'm glad it's over. And I am, except it doesn't feel quite over for me yet. Bell or no bell, my body doesn't know that was the last infusion. My body only knows that it was poisoned again. At Day 13 of this last cycle, the chemo agents are still coursing through my body, on a search and destroy mission for cancer cells. And healthy cells. So although I don't go back for another round, I feel at least as wrung out as I did after previous infusions. My taste buds aren't still fully on-line, my skin is sloughing off, my hair is still detaching itself, and I'm foggy-brained and tired and tearful for no discernable reason. Beginning after the third round and intensifying this time, I have post-chemo muscle fatigue, common with docetaxel. What this translates into is thigh muscles that feel like they've been filled with cement. Even walking across a room leaves me wobbly. My on-line research tells me it's due to elevated oxidants and reductions in myosin expression, mitochondrial loss and increased reactive oxygen species production. But I'm sure you knew that, right? Apparently it will last for months.

The chemo agents themselves should clear themselves from my system in 28 days, but it will take much, much longer for me to return to something approaching normal. In fact, there are side effects that won't even occur for another couple of months or more. So it's hard for me to muster up the celebratory mood everyone seems to expect from me. I'm trying, but I'm just not there yet. Someone asked me if they'd be doing tests to see if the chemo was effective and when I said they wouldn't, he wanted to know how I'd know it worked. Without thinking, I said, "If the cancer doesn't come back, it worked, if it does, then it didn't work." Judging from his expression, that was a little unsettling to hear. But it's my reality and I don't have it in me to sugarcoat it. I think the enormity of the healing ahead of me - body, mind, and spirit - is really just starting to register for me.

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.

Sunday, September 23, 2018

Second verse, same as the first.

Round 2 was Friday. Two therapy dogs made their way through the crowded waiting room, patiently stopping and soaking in the petting and compliments. The other was a fluffy white Great Pyrenees wearing an orange tank top. Yes, football game day here. My oncologist had on an orange tie.

The routine is blood work first. I turned my head and held tissues over my eyes until the kind nurse was completely done accessing my port, even though this time only hurt for a second. She told me I did great and I shrugged. She said, "No. Look at me. LOOK at me (pointing to her eyes). You did fantastic. Say it." I was laughing by then and dutifully said, "I did fantastic." I quickly offloaded the bag of blood samples she'd handed me to my husband so I wouldn't have to look at them as we walked them to the lab. Fortunately, my WBC was within range, so I was good to go for that round of chemo.
Next up, the visit with my medical oncologist. He asked how things had been going, noting that he hadn't heard much from me in between rounds. He said, "You're smiling, you must be feeling okay!" He also told me he would be out of town three Fridays from now and and offered a few options: I could push the next round back to the following Monday, wait an extra week if I wanted to keep it on Fridays, or keep my scheduled appointment and see one of the NPs. I told him I'd like to push on through and stay on schedule. He said he didn't blame me and since I was doing well, I could skip seeing anyone and make it a shorter visit and then we'd meet again in 6 weeks. I liked that plan. He also asked if I felt like the ativan in my IV was adequate, adding, "Because I could drug you through to next Tuesday." That made me laugh, but I told him it was fine at the low dose - just enough to relax me a little.
Because during chemo I eat lunch, I talk a little to my husband, but mostly I doze or look idly around the room. I did plug into my iPad briefly to listen to music while they tried several times on both arms to get one man's IV started. This is nightmare material for me and I can't watch or listen. They were able to infuse the taxotere a little faster this time because I hadn't had any allergic reaction the last time. The total infusion was only three hours instead of four this time. The snap of the neulasta injector still surprised me. I'm guessing I'm going to curse under my breath each time. But I am learning and when it went off at home last night, instead of just lying there feeling the sting of it, I watched old tv shows to distract myself. Afterwards, my husband had made new potatoes with sour cream and caviar and it was nice to have a treat waiting.

I know my worst days for this round are still ahead, but I also know I'll get through it. The weirdest part? Seeing my balding head in the mirror and thinking about how much I look like my Dad.

Sunday, September 16, 2018

What we do when the days are good ones.

I was really starting to rebound by Friday so we decided to get out a little this weekend. Saturday, my husband and I went to a brewery with a tree-shaded outdoor beer garden and had a gooey gruyère and gouda grilled cheese sandwich on sourdough with a couple of pints - one of their IPA and one pale ale. My husband buzzed my hair down to next to nothing last weekend so now it's so short I'm self-conscious about it. I wear a cap when I'm out or at work. One of my partner's patients asked him if I was Muslim. I found that really funny. And I don't bother trying to cover up my port. It's just part of me until the chemo is over. I'm sure people wonder about it though because it looks weird - the big lump and jagged scar, then the tube that snakes under my skin over my collarbone, up to the bottom of my neck and into my jugular. Sometimes I catch sight of it and am taken aback.
See that left foot carefully not touching the bathtub? Still not working. The neuropathy causes my foot to sense anything cool as icy cold. Standing in the shower is impossible for me, so I take baths. And if I'm going to do that, it's going to be a lovely lavender-scented bath with candles. I saw my PCP last week because it had been a month with no improvement and he has put in a referral for neurosurgery. And I go see my plastic surgeon next week for a follow-up from the reconstruction and I'll ask her about it, too, since the problem happened in surgery. I would just like to be able to walk and stand without intense pain. By the way, I tried the CBD oil for a few weeks and took it religiously. Didn't help with the pain or tingling, didn't help me sleep, didn't make me any calmer. Nothing. I stopped taking it when I started chemo. When I got out of the bath and the water level dropped, I saw it - a ring of my 3/4 inch hair. So it's finally started. I'd read that hair usually starts falling out in earnest by day 14 or 15, but this is day 17 for me and it's the first hint of my hair starting to eject. Honestly, I'm relieved. If the poisons are killing my fast-growing hair cells, it means they are also killing any rogue cancer cells that might be in me.
Today has been mostly overcast with light rains. It only got up to 73 today, in contrast to the near-90's we've been having. We decided to get out again and this time we met up with two other couples in our neighborhood at another brewery nearby. Interestingly, both of the women in these couples have had breast cancer, so they've been a great help to me. It was good to sit in the breeze, talking and laughing with friends. I know that in another five days I'll start the downward slide again, but I also now know that it gets better and I can have fun during those windows. I'm going to live life normally during those times and enjoy whatever good days are given to me.

Saturday, September 8, 2018

Jagged little pills.

Prior to starting chemo, I did a lot of research about side effects of taxotere and cytoxan and neulasta. And I was careful about which websites I visited. So when I found a publication on the NIH website about the amino acid L-glutamine and its apparent protective effects, I read it throughly. Particularly the section on glutamine supplementation in chemotherapy. The study showed some neuroprotective effects for both cyclophosphamides and taxanes. The studies conclusions included this gem:
"Supplementation with this inexpensive dietary supplement may have an important role in the prevention of gastrointestinal, neurologic and, possibly, cardiac complications of cancer therapy. These complications often negatively affect the quality of life and may also lead to changes in therapy, which potentially alter efficacy. Glutamine may also improve the therapeutic index of both chemotherapy and radiation, increasing cytotoxicity while concurrently protecting against toxicity."

Additionally, women on a chemo support board recommended biotin for nail changes (the hair is going regardless). I went searching again. Another NIH study said antioxidants and vitamins don't decrease the efficacy of chemo. The evidence is unclear about whether biotin can actually help but it does not seem to hurt.

So did I rush out and buy the two supplements? No, I did not. I sent a message to my oncologist about what I read and asked if he was on board with me taking them. When I got an affirmative answer, THEN I bought them. Glutamine was trickier to track down, so I ended up at a health store, with shelves stocked with all manner of pills and mystery potions. When the woman behind the counter found out why I wanted them, she pushed pamphlets on me with information about some supplement combo. She told me that "No matter what they tell you at the chemo center," everything in it was safe. Well, that sounds to me like practicing medicine without a license. I left with just the glutamine, the pamphlet with its crazy ingredients and wild claims, and a vow never to go back.

Cat's claw, sheep sorrel and slippery elm, anyone? Yeah, I'm not taking the word of a shop clerk over an oncologist either.
So the first couple days after chemo weren't bad. Even the infusion from the onpro neulasta delivery device on my belly only stung a little for about 15 minutes of the 45 it took to empty into me. When I rolled through the next day without a hint of bone pain, I was optimistic. And then day 4 kinda sucked. No nausea, ever, but they are really good these days with medicating that. But fatigue, and an upset stomach, and headache. That night I didn't fall asleep until after 4 am. Day 5? It didn't kinda suck, it really sucked. Now I felt like I was slogging through mud, my belly twisted into knots, mouth sores developing, and my thigh and hips bones began aching as they started to churn out new white blood cells. I'll be honest, it was a pretty weepy day for me.

Fortunately, I turned a corner the next day and I'm learning. I have my own little pharmacy now, both prescription and oncologist-approved OTC meds and next time I'll know what to take in advance. Like doubling up on my usual loratidine and throwing in aleve ahead of the bone pain. But the effects are cumulative and I already feel myself bracing for the next round.

Swallow it down (what a jagged little pill)
It feels so good (swimming in your stomach)
Wait until the dust settles
You live you learn, you love you learn
You cry you learn, you lose you learn
You bleed you learn, you scream you learn
You grieve you learn, you choke you learn
You laugh you learn, you choose you learn
You pray you learn, you ask you learn
You live you learn

- Alanis Morissette