Saturday, September 7, 2019

And The Saga Continues

Wow. Has it really been TEN MONTHS since I posted an update? I actually did write something last December which wasn't posted. I just re-read it. How depressing. Maybe I'll post it eventually, but not now. It's not uplifting, to say the least.

So much has happened since November, 2018...

Went for surgery February 18, 2019. Lumpectomy. Piece of cake, right? Well...Fortunately I'm fuzzy on some of the details, but I DO remember bleeding through the incision onto my hospital gown. Twice. On at least one of  these occasions there was ALOT of blood. A. LOT. Did this portend what was to come? I think I had something like 40 stitches. That sure seems like a lot for a mere lumpectomy, but, what do I know?

Fast forward to Saturday, March 9th, 2019. I didn't feel very well. I actually hadn't felt well the day before, either. Thankfully I had the presence of mind to take my temperature. I think it was 100 point-something. Not alarmingly high. Not unless one is post-surgical, apparently. Took it again off and on for the next couple of hours while calling my surgeon's office. For hours. I kept leaving messages. Doesn't his office have a plan for after-hours patient emergencies? Apparently not.

 I finally called the number on the back of my health insurance ID card and was advised to go to the E.R. I still wasn't alarmed, I mean, 100 point-something isn't so bad, right?

 Getting out of bed and forcing myself to go to the E.R. was a chore. I SO wanted to just stay home. I mean, who really wants to go to an E.R. and wait? And. Wait. For. Hours. Not fun, especially when one is feeling shitty. Of course one wouldn't be going there otherwise. But I digress.

 I thank God that I went. The alternative might have been quite tragic.

Where was I? Oh, yes, asking, "A 100 point-something fever really isn't so bad, right?"

WRONG. That 'little' fever began an 8-day odyssey of sepsis and two surgeries. Yes, two additional* surgeries. I was told that they were surprised that my kidneys hadn't shut down. They took (skip this sentence if you're squeamish) 1.7 liters of fluid and a bunch of necrotic tissue from my left breast. They packed it and, several days later, were blessedly able to close it up with the second surgery. I was discharged on March 17, 2019. Happy St. Patty's Day! No green beer for me, however, as I had around-the-clock oral and IV-port (all available veins had been blown) antibiotics prescribed through the end of that month. Every eight hours I sat at the kitchen table, donned a mask and gloves, and administered four syringes (two saline) to myself through my chemo port. It was a little scary. That plus the oral antibiotics.

 When I think of the eight days of in-patient antibiotics, both oral and IV, PLUS the two weeks post-op of the same, it just blows my mind re: how bad this infection must have been. Well, it was sepsis. SEPSIS. That's SCARY. So, at this point, I think I had 50+ stitches. That part of my body looked like something Dr. Frankenstein had assembled. What a mess. But there's a difference between life-saving surgery and cosmetically-appealing surgery. At this point, I am definitely sporting the former.

After all of this, I was told that "the tumor board" (Is that some sort of secret club? Do they have a secret handshake?) advised that I should have a mastectomy.* And, here we are, in early September, 2019. I've been waiting all summer for that surgery. I'm currently on my second plastic surgeon and my third general surgeon. I'm still on my first infectious disease Dr., however. Oh, that reminds me, I had a SECOND infection in late July. Thankfully that E.R. visit did NOT result in hospitalization, merely IV antibiotics and a 10-day oral course. UGH.

 My poor old 14 year-old dog truly would've lost her mind.

 You may be asking what the holdup is. Well, back in March, the local E.R. had shipped me off to a hospital 25 miles from home, claiming that all nearby were full. Thus I received care from a whole slew of doctors whose offices are at least 25 miles away.

 Lately my insurance company...need I go on? I'm currently in the middle of waiting on a referral to a new surgeon who is closer to home. Not a bad thing as I was, shall we say, losing faith in the former. I could write a whole essay on his office staff alone but I'll spare you.

Well, that tale was surprisingly easy to tell, after all. Either enough time has elapsed to be able to write about it comfortably or I've left out a lot. If you've read this far, I thank you. I definitely do not intend to wait almost a year until the next update.
The saga continues...








* Why have one surgery when you can have four? (Or five?)

Wednesday, November 7, 2018

The Twelve Days of Taxol Updated

OK, so I re-wrote the lyrics...

On the first day of Taxol, my doctor gave to me a declining white blood cell count.
On the second day of Taxol, my doctor gave to me two peeling feet and a declining white blood cell count.
On the third day of Taxol, my doctor gave to me three bleeding gums, two peeling feet, and a declining white blood cell count.
On the fourth day of Taxol,  my doctor gave to me four tingling fingers, three bleeding gums, two peeling feet, and a declining white blood cell count.
On the fifth day of Taxol,  my doctor gave to me five achy joints. (brief pause).  
...four tingling fingers, three bleeding gums, two peeling feet, and a declining white blood cell count.
On the sixth day of Taxol, my doctor gave to me six sleepless nights, five achy joints. (brief pause).  
...four tingling fingers, three bleeding gums, two peeling feet, and a declining white blood cell count.
On the seventh day of Taxol, my doctor gave to me seven bouts of nausea, six sleepless nights, five achy joints. (brief pause).
...four tingling fingers, three bleeding gums, two peeling feet, and a declining white blood cell count.
On the eighth day of Taxol, my doctor gave to me eight stool softeners, seven bouts of nausea, six sleepless nights, five achy joints. (brief pause).
...four tingling fingers, three bleeding gums, two peeling feet, and a declining white blood cell count.
On the ninth day of Taxol, my doctor gave to me nine itchy rashes, eight stool softeners, seven bouts of nausea, six sleepless nights, five achy joints. (brief pause).
...four tingling fingers, three bleeding gums, two peeling feet, and a declining white blood cell count.
On the tenth day of Taxol, my doctor gave to me ten balding patches, nine itchy rashes, eight stool softeners, seven bouts of nausea, six sleepless nights, five achy joints. (brief pause).
...four tingling fingers, three bleeding gums, two peeling feet, and a declining white blood cell count.
On the eleventh day of Taxol, my doctor gave to me eleven days’ exhaustion, ten balding patches, nine itchy rashes, eight stool softeners, seven bouts of nausea, six sleepless nights, five achy joints. (brief pause).
...four tingling fingers, three bleeding gums, two peeling feet, and a declining white blood cell count.
On the twelfth day of Taxol, my doctor gave to me twelve days of brain fog, eleven days’ exhaustion,  ten balding patches, nine itchy rashes, eight stool softeners, seven bouts of nausea, six sleepless nights, five achy joints. (brief pause).
...four tingling fingers, three bleeding gums, two peeling feet, and a declining white blood cell count.

I mean, what ELSE do I have to do? Oh, yeah, sleep, complain, drink tons of water, go to the bathroom 1,000 times a day, watch the dog snore...listen to endless podcasts when my eyes get too blurry to see,...eat. I put in "brief pause" as there's a good chance that my oncologist's office is going to perform this at their company Christmas party. Cool, huh? Oh, to be a fly on THAT wall! 🎄

Wow! Is the formatting all whacked out on this? My chemo brain - oh, ALL RIGHT! My BRAIN, PERIOD can NOT figure out how to remedy that. Fortunately these lyrics are repetitive as heck, plus everyone and their uncle knows this song so, hopefully, you won't have too much trouble singing along in your head. Or out loud. Whatever your office mates can tolerate. 😜

Wednesday, October 3, 2018

The 12 Days of Taxol




(Sung to the tune of "The Twelve Days of Christmas")

On the first day of Taxol, my doctor gave to me a decreased white blood cell count.
On the second day of Taxol, my doctor gave to me two tingly feet and a decreased white blood cell count.
On the third day of Taxol, my doctor gave to me three new mouth sores, two tingly feet, and a decreased white blood cell count.
On the fourth day of Taxol, my doctor gave to me four racing heartbeats, three new mouth sores, two tingly feet, and a decreased white blood cell count.
On the fifth day of Taxol, my doctor gave to me five achy joints...  
Four racing hearts, three mouth sores, two tingly feet, and a decreased white blood cell count.
On the sixth day of Taxol, my doctor gave to me six sleepless nights, five achy joints... 
Four racing hearts, three mouth sores, two tingly feet, and a decreased white blood cell count.
On the seventh day of Taxol, my doctor gave to me seven bouts of nausea, six sleepless nights, five achy joints...  
Four racing hearts, three mouth sores, two tingly feet, and a decreased white blood cell count.
On the eighth day of Taxol, my doctor gave to me eight heads-a-balding, seven bouts of nausea, six sleepless nights, five achy joints...  
Four racing hearts, three mouth sores, two tingly feet, and a decreased white blood cell count.
On the ninth day of Taxol, my doctor gave to me nine itchy rashes, eight heads-a-balding, seven bouts of nausea, six sleepless nights, five achy joints...  
Four racing hearts, three mouth sores, two tingly feet, and a decreased white blood cell count.
On the tenth day of Taxol, my doctor gave to me ten stomach upsets, nine itchy rashes, eight heads-a-balding, seven bouts of nausea, six sleepless nights, five achy joints...
Four racing hearts, three mouth sores, two tingly feet, and a decreased white blood cell count.
On the eleventh day of Taxol, my doctor gave to me eleven days’ exhaustion, ten stomach upsets, nine itchy rashes, eight heads-a-balding, seven bouts of nausea, six sleepless nights, five achy joints...  
Four racing hearts, three mouth sores, two tingly feet, and a decreased white blood cell count.
On the twelfth day of Taxol, my doctor gave to me twelve nights-a-coughing, eleven days’ exhaustion, ten stomach upsets, nine itchy rashes, eight heads-a-balding, seven bouts of nausea, six sleepless nights, five achy joints...
Four racing hearts, three mouth sores, two tingly feet, and a decreased white blood cell count.

Just a little ditty in honor of my starting Taxol last week. As of today, two Taxol treatments down, 10 to go. Soldier on!

Monday, September 3, 2018

Nadir. And I'm not talkin' Ralph!

Well, Ralph would be Nader, with an -er ending. Anyway, boys & girls, today's vocabulary word is nadir. 

na·dir
ˈnādər,ˈnādir/
noun
noun: nadir; plural noun: nadirs
  1. the lowest point in the fortunes of a person or organization.

    "they had reached the nadir of their sufferings"

    synonyms:lowest point, lowest level, all-time low, bottomrock-bottom;
    informalpits
    "the nadir of his career"


My oncologist used this word when I saw him last week and, had that not been such an apt description of the state I was in, I might have laughed out loud.

Chemo #3 was 12 days ago and I'm just now starting to feel kinda' normal. That can only mean one thing: it's time for MORE CHEMO. Yep, more is scheduled for 2 days from today. 

Seems like recovery time is longer between each successive treatment. Well, actually it IS. See vocabulary word cumulative in my last post. 
The good news is that this upcoming fourth treatment is supposed to be the last of the super-crappy chemos. The last of the treatments with drugs that start with A and C. I don't know the names of them off-hand and do you really need to have them spelled out? I thought not. The next drug starts with a T and it's supposed to be easier to handle. If I can just get past this next dose of poison and the two or more weeks it's going to take to recover, then I'll be a happy camper. In the meantime, I'm saving money on shampoo, conditioner, hairspray, etc. Thank you for all of your prayers, good wishes, and happy thoughts. 💗

Tuesday, August 21, 2018

My Taste Buds Are Back for a Week. Where's the Food?

I saw that on a funny meme (yes, there are funny cancer memes) and today I can really relate to it.  Tomorrow is chemo #3.  So today I'm not only tasting food, but experiencing the energy to do a few chores and take care of some personal errands that I will just feel too crappy to do for who-knows-how-long after tomorrow's poisoning.  Chemo #2 hit harder than  chemo #1. Turns out that's to be expected.  Apparently the effects of the poison are cumulative. 

cu·mu·la·tive
ˈkyo͞omyələdiv,ˈkyo͞omyəˌlādiv/
adjective
adjective: cumulative
  1. increasing or increased in quantity, degree, or force by successive additions.
    "the cumulative effect of two years of drought"
    synonyms:increasing, accumulative, growing, mounting;

Yep. That about sums it up.  So I'm a little (OK, a LOT) concerned about tomorrow.  Well, mostly the two to three days after when the full wrath of the poisoning tends to descend upon me and linger for days.  Or weeks.  Hopefully I can sleep through it as per usual. 

Anyway, the bottom line is that today and yesterday feel like my own personal Last Supper.  Sometimes I wonder if I'm just going to feel crappy all the way to chemo #4 and beyond. That means about a month of crappiness ahead.  The only upside is that chemo #4 is my last of the super-crappy chemos.  After that I'm to receive 12 weeks of weekly less-crappy chemo.  So I guess all I can do at this point is hold my nose and jump in. 

Monday, August 20, 2018

Gone Today, Hair Tomorrow

Yep. I'm bald. Bald and bitchy. Just don't call me 'cueball.'

So...a week or two ago I noticed my hair coming out in handfuls. Yes, handfuls. So. Many. Handfuls.  It's really amazing how much hair is on one's head. Even on one who believes they don't have a lot of hair. Trust me. You have a lot of hair. Possibly a ton of hair. Or close to it.

So...my helpful daughter volunteered to brush my hair. OH. EM. GEE. Those handfuls became brushfuls. It was crazy. And they just kept on coming. She finally put down the brush and just started raking through my hair with her fingers. Interesting that the longer hairs seemed to all come out first. I guess that makes sense. After all, they're the oldest. She eventually fetched a ziplock gallon bag and we now have a lovely bag of hair in the bathroom cabinet. Weird, you may think. Well...

I had read a story about a chemo patient who, after drying her hair, would shake the towel out the window. She did this repeatedly over some weeks. Several months later, a neighborhood child ran to her holding a sweet little bird's nest, commenting on how soft it was. The chemo patient picked up the nest and realized that it was made almost entirely from her own discarded hair and was, indeed, as soft as could be. Isn't that sweet? I may have told this story in a previous post but I'm much too tired to go back and look. I claim chemo brain! So I figure that, next spring, I'll help the little birdies out.

This is a good time to mention a particular angel in my life. A fellow BC warrior, she apparently had quite the scarf and beanie collection. She offered to send me some, as she said she had 'zillions.' Well, zillions is a big number so I took her up on her generous offer. Let me just say that I am the proud owner of several beautiful scarves of all sizes, colors, and fabrics...some are even pre-tied! And some adorable little beanie hats in a soft bamboo fabric. I seem to have a head covering to go with everything. I'm so blessed.

Saturday, August 4, 2018

One Boob Doll

Today I'm one step closer toward achieving the dream of every baby-boomer: to be a rock star! Yeah, baby!

Made it to my drum class ('Principles of Drum Set' or something like that) after missing the last 2 Saturdays. So I've attended sessions 1 & 4. Missed 2 & 3. It was a lot of fun. And I have a lot of practicing to do. The only other student in the class over 8 was not there today. I'm probably going to miss session 5 next week due to chemo recovery/afermath. We'll see. At least I have my trusty drumsticks from Amazon.com with which to practice.

So my daughter is a fan of a band called One Eyed Doll. She really gets my (sick, weird, off-the-wall, gallows) sense of humor. When I told her I was going to start a rock band with my new-found drum playing skills and asked her to guess the name of said band, she needed no prompting. She knew exactly what I was going to say. (See title of this post above). It's really wild when a person who came out of your body thinks the same things you do at the same times. I still have two boobs, btw, for those inquiring minds that need to know. And the name stays, whether I end up with 0 boobs or 3 or 4.

I'm really having a great weekend. I guess one just lives it to the fullest when one knows that the next one may be not-so-rosy. Last night we went out for sushi 🍣with another couple. DELICIOUS! And so fun! The place was noisy as hell,🙉 as always. Usually that bothers me so we go elsewhere but last night I didn't care. It was just fun to be OUT and able to taste FOOD and ENJOY it and not worry about what would happen G.I.-wise later. Maybe that's T.M.I. Have I used enough acronyms here? 😆

I managed to finally file for disability on-line yesterday, after having put off going into the EDD (another acronym) office for WEEKS. Long story short, it started out as unemployment due to lay-off but then the Big C came along and then it dawned on my that I probably should qualify for disability 'cuz who's going to hire me when I need to spend half the work week at doctor appointments? Apparently all I needed to do was open another account or claim or whatever online instead of constantly having my old password not work and waiting (and waiting and waiting and waiting and waiting and waiting) for the promised-but-never-delivered email with the link to establishing a new password. Idiots. I hope my 49 days aren't up. That's the State's threatened deadline to file such things, I believe. Idiots. The truth is that I just wasn't UP to walking into that office and having to deal with a...with a...a...moron. My apologies to any employees of the great state of California who may be reading this. I'm definitely not talking about you.

That's about it, except for hair and bones. Hair: still here, although I think it's falling out slightly faster than usual. I have a feeling that this coming second round of chemo may leave me a tad follicularly challenged. Something to look forward to! Bones: The possible bone pain as a result of the neupogen injections have NOT materialized. How cool is THAT? I was told to take Claritin daily to offset the bone pain. Well, I've been taking it daily for years so perhaps I was more than ready for neupogen's assault. Or perhaps with my history of osteopenia, osteoporosis (I think), and hip replacements, I'm actually having bone pain but don't realize it. Whatever it is, I'm grateful.

Party tomorrow! I really want to go, whether I'm up to it or not. 😉