So a couple of years ago I started a blog on Wordpress for writing, because Wordpress has more up to date functionality and is in many ways easier to use.
I intended to use that one for "professional" writing things and this one for personal, but in the last two years I've discovered a couple of things.
1) I don't do well at "professional" website writing...it ends up way too generic and I feel like it's boring, therefore it's probably pretty boring to read. Gross. No.
2) I'm too old and busy to hide the freak flag. Fuck that.
I exported all of THIS blog this afternoon and uploaded it to my other one, which will be quickly renamed No Pithy Phrase as well, but the address is way easier: http://jessicasettergren.com.
This is my last post on Blogger, so if you follow me here and want to keep up with my weirdo blog stuff, please come on over to the insanity at the new address. If you've had enough, hey, I totally get it and thanks for playing.
I'll likely leave this site as is for a while and I haven't deleted any of the content, just migrated it over.
Thursday, March 26, 2020
Monday, March 09, 2020
The 1/2 Way Update: I might need Ripley to come to chemo.
Today I will have chemo infusion 8 of 16, which means I'll officially hit my 1/2 done mark at 4:30 or so.
Fun facts about Taxol/paclitaxil.
It was derived from the Pacific Yew tree in the late 60's/early 70's. Did you know yew is one of the trees that is universally fatally toxic? Yeah...even birds have to be careful not to swallow the seeds: the only non-toxic bit is the little jelly around seeds. Yep. I'm not kidding when I say I'm voluntarily poisoning myself every week.
Important note: the Pacific Yew is now endangered. Yes, directly because of cancer: it took a while for scientists to be able to synthesize the drug, and since it's the bark that's used to make Taxol and skinning a tree is pretty much as fatal as skinning anything else, I'm EXTREMELY aware of the sacrifices made to keep my cancerous ass alive. Or, cancerous boob, I suppose. Thankfully, it's now semi-synthesized.
Much of the negative response during infusion (oh, and I have some), is because it's essentially plant based histamine response. Two very important things to note from that sentence.
First, for all the anti-chemicals-in-anything folks who might read this: PLANT BASED ALL NATURAL DOESN'T MEAN IT'S GOOD FOR YOU. Hi, fatally poisonous plant without processing, and guess what? Still fatally poisonous. Taxol (like all chemo infusion drugs) is specifically measured out in doses based on my weight and health status, so it's a new personalized dose every time and monitored closely in case breaks/changes are needed. I'm all about natural remedies to support science, essential oils and stuff help mitigate some side effects. I wouldn't recommend chewing yew bard because it's "more natural" than Taxol...although I suppose that's a way to Darwin your way out of worrying about cancer anymore.
Second: I have hay fever already. So...I am pumped full of Benadryl and steroids before treatment (the Benadryl is part of the pre-treatment infusion bag of tricks, along with enough saline that I'm glad my IV has wheels for bathroom breaks). Unfortunately, MY during-infusion reaction is really intense sternum and hip bone pain, and low back muscle pain. SINCE WHEN IS ALLERGIC RESPONSE BONE AND MUSCLE PAIN? Luckily, it only lasts 8 minutes (last week Mom timed it, since she's a nurse and would be paying attention to those things) and it's not actually bad enough to stop or delay treatment. Honestly, I'd rather not stop or delay...even 8 more weeks is a long time to look at for me right now. I'm fucking tired.
I'm not joking you guys...the sternum pain gives me a serious "fuck, I really AM going to die an alien host" moment every week. (I considered adding an Aliens video here, but that's mean because it's a gross video and you're welcome.) Also I'm pretty glad that hasn't happened yet, because have you EVER seen a huge room of people with wheelie IV stands try to outrun anything? Ok, neither have I, but I can imagine it, and let me tell you that'd be a huge mess all around. Plus nobody has any energy in that room. I wonder if cancer and chemo is a transferable poison to aliens.
Anyway, that went off the rails a bit. I'm off to get my drugs in, and hope there's no secret sneaky creatures in my chest today.
8 more after today.
Updated because I put the damn date in instead of the actual number...today is the 9th and I had my 8th infusion, which means I have 8 left. Good lord...I blame chemo brain.
Fun facts about Taxol/paclitaxil.
It was derived from the Pacific Yew tree in the late 60's/early 70's. Did you know yew is one of the trees that is universally fatally toxic? Yeah...even birds have to be careful not to swallow the seeds: the only non-toxic bit is the little jelly around seeds. Yep. I'm not kidding when I say I'm voluntarily poisoning myself every week.
Important note: the Pacific Yew is now endangered. Yes, directly because of cancer: it took a while for scientists to be able to synthesize the drug, and since it's the bark that's used to make Taxol and skinning a tree is pretty much as fatal as skinning anything else, I'm EXTREMELY aware of the sacrifices made to keep my cancerous ass alive. Or, cancerous boob, I suppose. Thankfully, it's now semi-synthesized.
Much of the negative response during infusion (oh, and I have some), is because it's essentially plant based histamine response. Two very important things to note from that sentence.
First, for all the anti-chemicals-in-anything folks who might read this: PLANT BASED ALL NATURAL DOESN'T MEAN IT'S GOOD FOR YOU. Hi, fatally poisonous plant without processing, and guess what? Still fatally poisonous. Taxol (like all chemo infusion drugs) is specifically measured out in doses based on my weight and health status, so it's a new personalized dose every time and monitored closely in case breaks/changes are needed. I'm all about natural remedies to support science, essential oils and stuff help mitigate some side effects. I wouldn't recommend chewing yew bard because it's "more natural" than Taxol...although I suppose that's a way to Darwin your way out of worrying about cancer anymore.
Second: I have hay fever already. So...I am pumped full of Benadryl and steroids before treatment (the Benadryl is part of the pre-treatment infusion bag of tricks, along with enough saline that I'm glad my IV has wheels for bathroom breaks). Unfortunately, MY during-infusion reaction is really intense sternum and hip bone pain, and low back muscle pain. SINCE WHEN IS ALLERGIC RESPONSE BONE AND MUSCLE PAIN? Luckily, it only lasts 8 minutes (last week Mom timed it, since she's a nurse and would be paying attention to those things) and it's not actually bad enough to stop or delay treatment. Honestly, I'd rather not stop or delay...even 8 more weeks is a long time to look at for me right now. I'm fucking tired.
I'm not joking you guys...the sternum pain gives me a serious "fuck, I really AM going to die an alien host" moment every week. (I considered adding an Aliens video here, but that's mean because it's a gross video and you're welcome.) Also I'm pretty glad that hasn't happened yet, because have you EVER seen a huge room of people with wheelie IV stands try to outrun anything? Ok, neither have I, but I can imagine it, and let me tell you that'd be a huge mess all around. Plus nobody has any energy in that room. I wonder if cancer and chemo is a transferable poison to aliens.
Anyway, that went off the rails a bit. I'm off to get my drugs in, and hope there's no secret sneaky creatures in my chest today.
8 more after today.
Updated because I put the damn date in instead of the actual number...today is the 9th and I had my 8th infusion, which means I have 8 left. Good lord...I blame chemo brain.
Monday, February 24, 2020
The End of the Red Devil and Other Random Events
A couple of weeks ago I had the last infusion of AC and last week I started my 12 weeks of Taxol. Doxorubicin (the A of the AC...don't ask me why, medical jargon makes zero sense to me most of the time) is the one often called the Red Devil, because it has dangerous side effects and has to be administered by the nurse directly into the port, vs through an IV drip. I'm thoroughly happy to be done with them: the last recovery period was longest so far (I wasn't well from Friday after chemo through Thursday the following week).
But I had a week in between and I almost felt like a normal human for a bit! Took my little bald brainpan on holiday over Valentine's day to Duluth. I took pictures of the lake for the Banshee book, toured Glensheen for the first time (yes, I know...I grew up in Duluth and should've been there a lot over the years, but I never made it), had a margarita. The updates about the Banshee book will likely end up on my other blog, since it's writing related, but suffice to say I found an excellent book on the hauntings of Lake Superior, which included some Anishinaabe stories suspiciously close to dryads and mermaids. I am STOKED: I don't even have to explain in the novel why there are supernatural things living in/around the lake...they were already there. Mwahahaha.
Yes, I'm a wild and exciting person.
Then I got ready for my last 3 months of chemo. So this stuff isn't supposed to be as bad: it's a lower dosage, the side effects don't generally include nausea, and over the next month or two I'm supposed to actually feel better as the AC effects wear off completely. Of course, Taxol has its own set of indignities.
1) I have to take 5 steroid pills 12 hours before treatment, and 5 MORE 6 hours before, because there can be unpleasant side effects during infusion. If you don't know, that's a buttload of steroids. Turns out I have no problem sleeping with all those steroids overnight, but I may need to pull out my stupid scuba snorkel. Night sweats are no joke, and if THAT'S what hot flashes are like I might as well just invest in a swimming pool bed now. What the actual hell. Luckily I only have to do this on the night before/day of treatment. Last week my Nurse Practitioner at Oncology said I'm not allowed to have my IV outside in my underwear. Mean.
On the other hand, I AM MOTIVATED this morning.
2) The nurses give you a big dose of Benadryl as one of the pre-infusion meds. Benadryl makes me sleepy. This is important:
3) They also put a customer-service bell (the sort you'd see on a store counter) to hit if I start to feel any sort of weirdness during my IV drip. Remember how they gave me a big dose of knock-out-allergy-med first? So...hopefully if I'm asleep and my face swells up whomever is with me can hit the bell.
4) Turns out muscle aches are the most painful side effect this time (well, so far). The rest of the neuropathy (tingling and numbness in hands/feet) is cumulative...I hope the muscle/joint aches aren't, because Thursday last week I couldn't really get out of bed or sleep well: too many evil chemo-trolls beating my legs with big sticks.
5) Unfortunately, I continue to be a fucking weirdo with chemo. I felt mostly fine over the weekend, much better than I did the weekend after AC treatments, but Friday night while at a friend's for dinner I had some sort of weird pass-out-type episodes, the second of which had me waking up on their kitchen floor with upset people and dogs and a 911 call. Yeah. I made it to 42 before I had to be carried out of someone's house by paramedics and cops (good for them for not dropping my big ass) and take a ridiculously expensive ride in an ambulance. 100% do not recommend. Especially since the ER said all my tests are fine and they have no idea why it happened (and therefore, I have no way to know if it'll happen again).
I'm fine now, there were a couple of warning signs I'm watching out for, and I have an appointment with Oncology before treatment today to find out if anything changes, but I'd like to say THIS WAS NOT ON THE GODDAMNED LIST OF SIDE EFFECTS. What the hell...somebody tell my brainpan that I'm supposed to follow the damn program like every other good little breast cancer patient. No more new bullshit: I have books to finish.
It's awfully hot in here...can I do treatment in my underwear in the parking lot today?
Tuesday, January 21, 2020
Round 3 - Naps and Emergency Rooms and Where's My Bubble.
I haven't been around much since the holidays. To be fair, I haven't been around much in real life, either. But since people are starting to ask, I thought I'd give an update (because honestly, I'm fucking tired and I don't respond to most calls or texts or messages with anything but "ok" right now). This post is not edited for grossness: feel free to stop here with the assurance that after round 4 I should be feeling more like a human AND be less dangerously immuno-compromised.
So I've been sick with some ridiculously stupid virus since December 12th. Normal people get a cold, maybe if they're like me they get a little bronchitis afterward that hangs on an extra week or two, and move on. That is not what happened with me.
The current drug cocktail of chemo is the harsh sort: it attacks fast growing cells in the body. Let's define fast growing cells: hair. Nails. White blood cells (the little army of infection and virus killers that float along with your blood). So...the super fun poisoning I'm voluntarily doing to my body is effectively killing off my immune system each round, and each round is progressively worse. What does that mean?
Normal people have a white blood cell count of about 11,000. My white blood cell count yesterday was 800. For reference, I have to have a count of 5400 or higher to have treatment. To be fair, this wouldn't be something I'd notice other than being really fucking tired if they didn't take my blood every time I go to an appointment at Oncology. They're nice vampires, at least. Ultimately, this means 1) I can't see anyone who has even been EXPOSED to any illness. All you folk with adorable little germ spreaders at home are off limits until I'm done with round 4. 2) A fever or chills sends me immediately to the emergency room, do not pass go, do not (as I discovered a couple of weeks ago when the UC nurse said OH NO, we aren't handling that here, go to the ER right now) head to urgent care. 3) I'm tired. Like, nap after I take a shower because it takes too much energy tired, all the time.
By the weekend after chemo my body is at it's lowest point immunity-wise. By the weekend before the next treatment (that'd be this coming Saturday/Sunday, for those of you keeping count) it's back up to acceptable levels again, thanks to the Neulasta shot I get right along with chemo. Neulasta makes my bones go into PRODUCE ALL THE WHITE BLOOD CELLS RIGHT NOW overdrive, which makes my legs/hips/chest ache, but hey, bone marrow is a good thing. The weekend after chemo is the worst: I'm sick, exhausted, have no appetite, and generally just trying to get through the day. And my feet are sore, like standing on concrete for 15 hours each day sore, for ABSOLUTELY NO REASON AT ALL. It's utterly ridiculous, and terribly annoying.
On top of all of this, MY cold turned into lying in bed for three days unable to move other than to the bathroom to be sick, followed by a super fun round of bronchitis which also makes me sick, followed most recently by a nasty sinus infection which ALSO makes me sick. Feel free to read sick as vomiting until I'd rather just die, thanks. Unfortunately, it's not chemo-related and anti-nausea meds don't work. A couple of weeks ago I went to the ER because I got so violently ill I scraped up my esophagus and was throwing up blood. FUN. Interestingly, walking into the ER and saying "I'm on chemo and I'm throwing up blood" gets you a room pretty much immediately. I don't recommend. I've lost 30 pounds since December 16th when chemo started. I got a very soft-spoken reprimand from the nutritionist at Oncology today for not having enough calories and I'm told I'm not spoda lose any more weight, please, until treatment is over (1 more round of this, 12 weeks of the next drug...so May). I take more pills in the morning than Grandma right now, and thank all the gods for antibiotics that kill sinus infections.
Honestly, I've been LUCKY with all of this. I don't have many of the most common awful side effects, and if I hadn't had the death-cold that lasted all the way through I likely would've been mostly ok. But there you go: lost my hair (kept my eyebrows so far: WOOT!), spent the last month on the couch or in bed or throwing up and yell/crying FUCK YOU in the bathroom a lot, watched too much TV, hid from everyone (including my niece and nephews) because I'm now a bubble-girl germaphobe who does NOT want to end up in the hospital.
But I'm almost done: next Monday is round 4 of 4 for the AC, and then I have a three week break to get my shit together before I start the 12 weeklies. Rumor has it the Taxil is easier on the body overall than the AC I'm on now. I'm hoping I can go back to work in March when that treatment starts, because the side effects are WAY less harsh and I should be more energetic. Taxil also doesn't kill off my immunity, which means I won't be banned from public places or groups anymore...which means I'll likely be more interested in visitors.
Cancer sucks. Intentionally poisoning my body now that the cancer's gone in hopes it doesn't come back also sucks. I'm supported where I need it, and if I don't answer you directly please don't take it personally. I'm probably napping again.
So I've been sick with some ridiculously stupid virus since December 12th. Normal people get a cold, maybe if they're like me they get a little bronchitis afterward that hangs on an extra week or two, and move on. That is not what happened with me.
The current drug cocktail of chemo is the harsh sort: it attacks fast growing cells in the body. Let's define fast growing cells: hair. Nails. White blood cells (the little army of infection and virus killers that float along with your blood). So...the super fun poisoning I'm voluntarily doing to my body is effectively killing off my immune system each round, and each round is progressively worse. What does that mean?
Normal people have a white blood cell count of about 11,000. My white blood cell count yesterday was 800. For reference, I have to have a count of 5400 or higher to have treatment. To be fair, this wouldn't be something I'd notice other than being really fucking tired if they didn't take my blood every time I go to an appointment at Oncology. They're nice vampires, at least. Ultimately, this means 1) I can't see anyone who has even been EXPOSED to any illness. All you folk with adorable little germ spreaders at home are off limits until I'm done with round 4. 2) A fever or chills sends me immediately to the emergency room, do not pass go, do not (as I discovered a couple of weeks ago when the UC nurse said OH NO, we aren't handling that here, go to the ER right now) head to urgent care. 3) I'm tired. Like, nap after I take a shower because it takes too much energy tired, all the time.
By the weekend after chemo my body is at it's lowest point immunity-wise. By the weekend before the next treatment (that'd be this coming Saturday/Sunday, for those of you keeping count) it's back up to acceptable levels again, thanks to the Neulasta shot I get right along with chemo. Neulasta makes my bones go into PRODUCE ALL THE WHITE BLOOD CELLS RIGHT NOW overdrive, which makes my legs/hips/chest ache, but hey, bone marrow is a good thing. The weekend after chemo is the worst: I'm sick, exhausted, have no appetite, and generally just trying to get through the day. And my feet are sore, like standing on concrete for 15 hours each day sore, for ABSOLUTELY NO REASON AT ALL. It's utterly ridiculous, and terribly annoying.
On top of all of this, MY cold turned into lying in bed for three days unable to move other than to the bathroom to be sick, followed by a super fun round of bronchitis which also makes me sick, followed most recently by a nasty sinus infection which ALSO makes me sick. Feel free to read sick as vomiting until I'd rather just die, thanks. Unfortunately, it's not chemo-related and anti-nausea meds don't work. A couple of weeks ago I went to the ER because I got so violently ill I scraped up my esophagus and was throwing up blood. FUN. Interestingly, walking into the ER and saying "I'm on chemo and I'm throwing up blood" gets you a room pretty much immediately. I don't recommend. I've lost 30 pounds since December 16th when chemo started. I got a very soft-spoken reprimand from the nutritionist at Oncology today for not having enough calories and I'm told I'm not spoda lose any more weight, please, until treatment is over (1 more round of this, 12 weeks of the next drug...so May). I take more pills in the morning than Grandma right now, and thank all the gods for antibiotics that kill sinus infections.
Honestly, I've been LUCKY with all of this. I don't have many of the most common awful side effects, and if I hadn't had the death-cold that lasted all the way through I likely would've been mostly ok. But there you go: lost my hair (kept my eyebrows so far: WOOT!), spent the last month on the couch or in bed or throwing up and yell/crying FUCK YOU in the bathroom a lot, watched too much TV, hid from everyone (including my niece and nephews) because I'm now a bubble-girl germaphobe who does NOT want to end up in the hospital.
But I'm almost done: next Monday is round 4 of 4 for the AC, and then I have a three week break to get my shit together before I start the 12 weeklies. Rumor has it the Taxil is easier on the body overall than the AC I'm on now. I'm hoping I can go back to work in March when that treatment starts, because the side effects are WAY less harsh and I should be more energetic. Taxil also doesn't kill off my immunity, which means I won't be banned from public places or groups anymore...which means I'll likely be more interested in visitors.
Cancer sucks. Intentionally poisoning my body now that the cancer's gone in hopes it doesn't come back also sucks. I'm supported where I need it, and if I don't answer you directly please don't take it personally. I'm probably napping again.
Subscribe to:
Posts (Atom)