PAIN

I just couldn't think of a more apt title. OH. EM. GEE. 

Let me tell you, I am ONTO that whole oncologic radiology community, I am. I understand their timing, I do. 

You see, one is prescribed six weeks of daily radiation, with a follow-up appointment about three weeks AFTER it's all over. Fine. No problem. Well, except for the uncomfortable table one must lie upon and having to hold one's breath eight times for 30+ seconds during each treatment. Other than that, the treatments are brief and the personnel pleasant. (And the deep breathing is probably a healthy exercise).

One is given all kinds of literature, including that advising on how to care for irradiated skin. Coconut oil, of which I have plenty on hand (thank you, Costco), is one of the recommended treatments. 

Yes, I did notice my skin gradually showing some light sunburn-like effects over the six-week course, but nothing I couldn't handle, thanks to experience and my Irish ancestry...

UNTIL...

...the three days or so following the last treatment. OH. EM. GEE. Such pain! I found myself slathering on coconut oil 4-5 times per day. My poor dried-out, red, peeling skin just drinks it in, as does whatever old T-shirt I have chosen to ruin. As of this writing, it's been one week since the last treatment and I have by turns slathered on coconut oil and four types of lotion. Apparently my daughter and I are quite the collectors of skin hydration. I'm almost to the end of an expired tube of hydrocortisone. That and some left over hydrocodone have allowed me to sleep for the past two nights. Oh, and did I mention wine? That, too. Yep. Sorry, Lent. 

It seems that the follow-up appointment is purposely scheduled for when the patient is no longer suffering. HA! I'm onto you, you...you radiation oncologist, you! 

It seems as if the pain is letting up just a little. Just. A. Little. I had felt as if parts of my chest skin were going to split open but, today, not so much. Whew! I will be so grateful when I can wear clothes again and venture out into the world. Being quarantined with this Covid 19 virus has come in handy for that reason. 

Speaking of Covid 19, I can't help but reflect on where I was exactly a year ago; in isolation in a hospital with sepsis. Thank God that was last year and not this year. A year ago today was the last day in which I had to self-administer antibiotics via syringe through my chemo port; a procedure which required that I don a mask and gloves three times a day. THAT was a scary time. 

But I digress.

I just wanted to record the pain of my poor, irradiated chest skin; a pain that has almost...ALMOST brought me to tears, but not quite. This is the last battle of my personal war against "The Big C." I hope. 

Port de Bras

Port de Bras

No, we’re not talking a ballet move here.  I’m merely amused by the word ‘port’ in the same phrase as ‘bras.’* Quite apt for my purposes here; that being an essay about a port-a-cath being removed from  my chest after breast cancer treatment.

Actually, this probably won’t be much of an essay, as the surgery wasn’t much of a…surgery.  All that stress and sleeplessness the night before for…this:

I’ll just cut to the O.R., as rehashing the prep, even including veins worn out by chemo being nearly impossible to locate for an I.V., is just, well, B-O-R-I-N-G.

Apparently, all of the general anesthesia I’ve had within the last year has given me a bit of a drug tolerance, resulting in the “twilight sleep” not quite living up to that claim. Nevertheless, the surgery was almost pleasant as the doctor, nurses, and I discussed recent movies, the awards season, and Brad Pitt during the procedure. We even viewed a video of Mr. Pitt’s amusing SAG award acceptance speech!  Classical music playing softly over the O.R. speakers lent to a mellow atmosphere, made more mellow by the ‘cocktail’ flowing through my veins.  It truly was the most fun I’ve had lying on an operating room table, ever!

So, I just need to watch for infection, take only Tylenol for pain, and, my favorite instruction; not shower for three days.  Yeah, I’m an old hand at not showering, that’s for sure.  I think I went about 50 days early last year between the three surgeries over a 5-6 week period.  Just when you think you’ll no longer need those leftover disposable body wash cloths…

The above instructions are only in effect for three days, which means I’ll be able to shower just in time for RADIATION (see previous post). The fun continues…

* I actually got my very first bra on a March 17, St. Patrick’s Day.  At the time I thought that the phrase, “Erin Go Bragh” was quite apt, as well. Yeah, I can draw parallels anywhere.

Fade Away and Radiate*

Fade Away and Radiate*

We had a wonderful Christmas. Really great. Just stayed in, as I was recovering (again) from surgery. Finally, the mastectomy is finished. (Why have one surgery when you can have four?) I was just happy to be alive. It actually seemed as if the previous Christmas had only been a few months prior. Where did that year go?  I realized that I hadn’t been so sure that I’d be around for this Christmas. I suppose that was a subconscious thought all along. Wow. Grateful.

I was going to write an entry immediately after Christmas about my J.P. drain coming apart. I even had a catchy title ready: “MERry Christmas,” with the E and the R capitalized, as in Emergency Room. Yep, that’s right. Christmas night in the E.R., ladies and gentlemen. A first for us. The tube had detached from the drain bottle, which I hadn’t even realized could happen. Turns out that they are, actually, two distinct parts. After my infection/sepsis horror of last spring, I was a little freaked out, so off to the E.R. we went. Turns out that it wasn’t as big a deal as I had thought and they merely reconnected it. I was imagining the worst; that they'd have to surgically put in a new sterile one.  It actually detached a couple more times during the THREE WEEKS I had to wear it (UGH – there’s another tale of woe. LOL). I was so grateful to have that thing removed. Well, actually, it kinda’ removed itself. No, really. I had nothing to do with it.

January’s thrill (besides no longer having to wear a little drain bottle of yuck) was finally getting a prosthesis and a bra in which to put it. What a relief as, let me tell you, the socks weren’t working AT ALL. It had gotten to the point where I didn’t even want to leave the house. Vain, I know. No one’s looking at your boobs as much as you yourself are. Usually, that is. So nice now to just get dressed and GO as normal people do.

And now…(drum roll, please) The Next Hurdle…

So, I went to the Radiation Oncologist last week, confident that I wouldn’t need radiation. He thought, although everything looked clear, that it would be prudent to have a 6-week course of 28 treatments- just to be sure.

Wow. 

What a blow that was! I nearly burst into tears right there in his office. So that’s going to start within the next week or so. I’m really NOT looking forward to the side effects. I don’t want to be tired. I don't want fried skin. I don't want...I want to get things DONE. I want to get busy earning some money, etc. (*sigh*).

I seem to be having some PTSD-like symptoms lately, wherein all that has occurred over the last 19 months seems to be finally catching up to me. Many people told me I was brave. I don’t think it was bravery. I think it was a sense of unreality, of compartmentalization, of perhaps observing from afar what was, in fact, happening to me directly.

There was only one other time when I nearly lost it. That was a few months ago while digging through the PILE of cancer paperwork I have stored in a box and  having ALL OF THAT history smack me in the face, figuratively. Dear God, to look at all of those Dr. referrals and test results and hospitalization reports was just…overwhelming. It dawned on me that all of that hadn’t happened to someone else, but to me. How horrible. 

So now I face another challenge. Stay tuned.

*Blondie, “Fade Away and Radiate,” Parallel Lines album, 1978, Written by Christ Stein

It Is Done...I Hope

So...I had the surgery on 12/16/19 and went home on 12/17/19! What a relief, as the hospital room was FREEZING COLD...and the food was salt-free, caffeine-free, and flavor-free. An angel in a nurse's uniform had brought me a cup of coffee with actual caffeine in it, which was just what I had needed to conquer the sinus headache brought on by the cold, dry room.

I'm having surprisingly little pain, which is nice. Today I'm driving myself to the follow-up appointment since I'm not on any opioids. No antibiotics have been prescribed, either, which is of some concern since I've been labeled as "infection-prone." So far there are no signs of infection, however.  Hooray! Will take extra time to drive s-l-o-w-l-y as I'm not sure how that seatbelt is going to feel, nor how getting in and out of the car is going to feel.

I'm just so looking forward to healing. Again. And also to having a real fake boob. Fake fake boobs are a pain in the...chest. It will be a relief to have something that's meant for its purpose, rather than trying to improvise with uncomfortable, uncooperative alternatives.

Although four surgeries instead of one was a lot to go through, it kind of cushioned the blow of losing a breast, since it went in stages (more like pieces...oy!) It's still horrible, but it seems easier to accept this way, rather than what would have been a "one and done."

I'm grateful to have Christmas to distract me! And am looking forward to a new year with new beginnings, including getting my business up and running again.

Thank you to all of you for your good thoughts and prayers. The power of prayer has never been more apparent in my life than it has this past year or so. God bless you all.

P.S. Some wonderful, thoughtful friend sent me the warmest, softest blanket via Amazon yesterday, and I DON'T KNOW WHO IT IS! Alas, there was no card nor note nor clue of any kind. I'm so thankful for that and perhaps you can reveal your identity so that I can thank you personally. 💗

My Erstwhile Surgery Date

So...here it is. December 5, 2019. My erstwhile surgery date. The date I waited for ALL summer; through all of the bullshit of musical surgeons and appointments, all the hoops through which Anthem Blue Cross required we jump, it's HERE. Today. This is IT. Not the most convenient time of year, but THIS IS IT.

No, it isn't.

That's why I'm conscious, coherent, and writing this blog. It didn't happen.

We got a call two nights ago from the surgical coordinator at the doctor's office. Apparently THE HOSPITAL (not them, you see - it's THE HOSPITAL that goofed) double-booked the time or the O.R. or some other such bullshit and, so, I'm OUT. Hubby's convinced that there was a bigger name with better insurance who was given priority. After all, we're just the little guys. It's OK if we swing in the wind. It's OK that we made plans, rushed Christmas preps, notified friends & family, took time off of work, and got mentally, emotionally, and spiritually prepared for this scary eventuality. It's OK because it's no more serious than getting one's hair done or teeth cleaned, right? No biggy. She's been waiting all summer for this surgery? F HER! We'll just move her around like a friggin' pawn on a G.D. chess board.

Angry? Who, me?

Re: swinging in the wind, they were supposed to have called back yesterday to confirm the new date, or to confirm that they couldn't keep the old date or whatever-the-F. By 2:00 yesterday afternoon I was ready to start drinking so, of course, I had to call THEM. Voice mail. Natch.

Anyway, when she finally called me back it was with an entirely different date. So that's three, for those of you keeping score. Wonder how long that date will stick? I asked her if this was standard operating (pun intended) procedure for this particular hospital. This will be my first time at this hospital (I'm making the rounds). This certainly doesn't instill confidence. HELLO, HOLY CROSS HOSPITAL IN MISSION HILLS!

Well, I suppose that's all I needed to do here; vent. And so I have.

The saga continues...

New New New Doctors and a Surgery Date

So, hubby and I met the new plastic surgeon (#2). We liked him very much. AND he's only 2 miles away, instead of 25. Cool. He immediately urged me to see a surgeon that he likes to work with.

So, I got the referral (YAY, he's part of my medical group) and eventually we saw the new surgeon(#3). He's only about 10 miles away. Oh, wait, I forgot one detail. When I called in September to make the appointment, I was told that he was so busy that he wouldn't be able to see me until DECEMBER. Oy VEY. Well, the woman I was speaking with was so personable and decent, I somehow found myself launching into the condensed version of my saga and her immediate reply was that she would squeeze me in on a day in October. OH. EM. GEE. When does THAT ever happen?

Well, we liked this surgeon (#3) VERY MUCH. He seemed to have plenty of time for us, wanted to hear my whole story (See my previous post, "And the Saga Continues"), and just really seemed to be a no-B.S., no sugar-coating, straight shooter kind of guy.

And he has a sense of humor. When I asked him if he could save the nipple, his immediate response was, "You're kidding, right?" I just busted up laughing. He added, "Why? Are you planning to nurse?" Oh, geez. See, this is my kind of humor. And I know it's definitely not for everyone. Granted, this would not have been funny AT ALL a year ago, but I've been through so much already that I just have to laugh sometimes. No, I'm not planning to nurse, I'm 61! I'm just grateful that I once could and that all of this didn't happen during the childbearing years. That's a horror no young woman should have to face.

But wait, there's more: I got a surgery date! Like...IMMEDIATELY. Yes, during THAT first office visit! No muss, no fuss, no futzing around for an entire season (as I did all summer). Isn't it amazing what joy a competent doctor's office can bring? (happy sigh). Seriously, the nurse and the surgery scheduler obviously enjoy their jobs and it shows. Such a contrast from surgeon #2's office! It will be in early December at a hospital I haven't been in before. Hubby says I'm traveling the hospital circuit. At least this hospital is only about 10 miles from home instead of 25.

Reconstruction, should I even opt for that, will have to wait until after I'm all healed as I've been deemed "infection-prone." 😷

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?)

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. 😜

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!

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, bottom, rock-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. 💗

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. 

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.

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. 😉

Chemo Sobby

So, I had my first chemo 4 days ago. Then "hydration" the next day, along with a Neupogen shot. Another Neupogen shot the next day, AND I get another tomorrow and another the day after that. What is Neupogen, you may ask. It's a bone marrow stimulant with a reputation for causing bone pain. So I have that to look forward to. 😆

Seemed to lose a little more hair than usual while shampooing last night. I figure I'll be bald in 2-3 weeks. But I digress.

So, yesterday, 3 days after chemo, I just felt crappy. All that sleep I missed out on? I'm blessedly getting it back! So grateful I'm able to sleep because, frankly, unconsciousness is a blessing when one has a headache, fever, upset stomach, blah blah blah.

Now I don't know if my particular chemo office is typical or not but, judging from the info gleaned on the internet, it's decidedly low-rent. Expectation: Soothing, quiet, low-lit room with comfy recliners containing patients and their 1-2 supportive friends/family members who sit with them quietly playing board games, reading, or surfing the 'net on the free wi-fi provided. Or watching the television. Reality: Room too small for the dozen fake recliners (they don't seem to actually recline) with crappy linoleum, crappy lighting, no room for friends or family, NO wi-fi, 😲no TV...ugh. The upside is that it didn't take the 6 hours or so that I thought it would. More like 2+. Oh, and the room is rather warm, so the nice blanket I was given to ward off the chill has become superfluous. Hey, at least they'll give ya a pillow! I wish I could lie back and close my eyes but it's too upright. Whiney baby. That's moi. The staff is all very nice, however, I wish they would wear nametags like the doctors do. Because, being the daughter of an R.N., I want to know what the credentials are of the person administering my poison. Is that too much to ask? Yes. Yes, it is.

Well, I'm boring myself with my whining. I think... I think I just might be able to drive myself to get my shot tomorrow. Fingers crossed. 💉

Countdown to...

As the ever-approaching chemo day lurks on my horizon (3 days from now, but who's counting? ME, that's who!) I'm finding it hard to sleep. Actually, some nights it's flat-out impossible to sleep. Take the night before last. I was up until about 10:30 yesterday morning! And there went the day. I feel that I'll probably be sleeping a lot post-chemo, so I should stay awake and get a few things done while I still can. Ugh. Thoughts like this keep me up nights.

And now, as the day of poisoning nears, my head is swirling with thoughts of immunotherapy, clinical trials, Vitamin B17, etc. etc. Is pumping the poison practically straight into my heart what I really want to do? I mean, it seems to be standard procedure; chemo, surgery, radiation. That's how it's done. Isn't it? I like my doctors and trust them implicitly. As I write this I have another tab open on my computer to the American Cancer Society's Clinical Trials. I'm reading a lot. When I can. Sometimes my comprehension goes out the window. Probably as a result of distractions and distracted thinking. What's ahead? How sick will I be? Who's going to do the stuff I might be unable to do?

OMG I'm driving myself crazy just writing all of that.

SO...been looking at a LOT of wigs lately. Turns out there's (what seems to be) an awesome wig shop not far from home at all. I found them on line and have watched several of their videos. When I looked up where they were located...well, it just has to be fate that they're so close. Anyway, trying to get up the nerve to go in there. I figured hubby may not enjoy such an outing, so maybe I'll grab a friend and maybe go on a weekday which might be less busy. Or, on second thought, hubby might want to go.

I figure I need at least one serious wig that could pass for real hair to go with the freaky Halloween wigs with which I plan to complete my collection. Since it's late July, they will inevitably be available at retailers everywhere soon. Every now and then I might want to sport some freaky pink or aqua hair. Or maybe some rockstar hair. Amazon has all kinds of fun hair. I could have Axl Rose or Slash hair in no time at all. 🤣 To a former theatre major, the options are endless.

Oncological Logic

I really like my oncologist. Just came back from only the second appt. with him and I feel as if I'm in good hands.

Thankfully the PET scan came back showing only cancer in the left breast and lymph nodes. I was so afraid that it had spread. Started to imagine/horribilize that it was in my other breast, lungs, etc. Ugh.
Also, the EKG was good. And the port is in. The red blisters from the allergic reaction to the port bandages are healing, also. AND it's been 10 days since the port was installed so I can SWIM! Hooray! 🏊

So I start chemo next week. Sounds like an ordeal, but I'm glad I'll be doing something to fight this insidious invader. Kinda' scary. Don't know what to expect. Besides feeling like 💩, going bald, and barfing, of course. And being an absolute gem to be around, no doubt.

I have an amazing friend who just lost her husband to cancer. She has a blanket for me to use during chemo. What a beautiful gesture. I'll feel as if her husband is watching over me during the treatment. Another angel in my life. How do I deserve so many?

I told the Dr. today how freakin' TIRED I've been today and yesterday. More so than usual. He said it's probably because I've been through a lot of tests and appts. lately. He's right, I have. And there are many more to come. More appts., more scans, more EKGs...the fun continues.

Been watching a lot of Youtube lately. Cancer, wigs, etc. Some posts are very helpful. Some posters are just nuts. LOL. Right now I'm learning all about wigs. Mainly how to attach one to a bald head. I must admit that, with Halloween coming up (at least the retailers seem to think so) I expect to have lots of fun picking out a coupla' outrageous wigs to wear NOT for Halloween, but for every day. The weirder the better. My daughter has a hot pink number that I plan to confiscate for this purpose. I could have different hair every day - at varying levels of tacky, crazy, and realistic. 😆

I guess that's it for an update. I thought I had more to say, but I can't remember. I think I have chemo brain before the chemo.

Please Enter The donut

Yep, that's what P.E.T. must stand for. That was yesterday's adventure. How was it? Well, as Tom Petty said, "the waiting is the hardest part." And what a wait it was, although I have a feeling this was nothing compared to what's coming.

Got there at about 7:30 a.m. Drank some weird clear liquid and waited. And waited. And waited. Finally, at 9:15 a.m. I was called back. Only to wait an additional hour after being injected with weird radioactive crap. Third injection attempt was the charm as he blew out two veins with his first two attempts. I'm beginning to realize how one might appreciate having a port. He couldn't use my brand new port for some reason, though. It was still all bandaged up and sore.

So then it was into the donut for maybe 20 minutes. Kind of anticlimactic after all the waiting. Not so bad. If you close your eyes, you don't even know that the ceiling of the donut is practically on your face. Kinda' claustrophobic, but it seems they kept moving me in and out of the donut, so not so bad. I would say that the hardest part was having to hold my arms overhead with wrists crossed. Reason being my chest port wound was sore and the weird tape was pulling.

My angel friend (you know who you are) then took me back home where I was so happy to be able to EAT. Then I basically napped the afternoon away as I had only slept about 3 hours the night before.
Anticipatory insomnia, I suppose.

Today got up super early and am thrilled to report NO APPOINTMENTS! YAY! Also, (hold onto your hats)...I get to SHOWER! Had to wait 3 days from port installation. It will be so nice to wash my hair! Now just one more week until I can swim. 🏊Missing that 'cuz the pool is so nice and I like to swim at night if I can't sleep.

Took the bandages off of the port incisions in anticipation of a shower and they don't look too bad at all. The skin around is kinda' irritated and itchy from me scratching and that weird tape that looks like clear packing tape that was on top of the bandages. I think that plus the betadine really dried out and irritated my skin. The port underneath my skin is kinda' weird but not too gross. Incisions are kinda' (there's that word again) high up so my bikini modeling days may be numbered. 👙

So, on the advice of another angel (dear friend), I'm going to get a second opinion prior to starting chemo. It only makes sense. So blessed to have my friends to think of this stuff for me. And that's going to be even MORE valuable once I have "chemo brain." Although, I can't help but wonder if chemo might improve my memory as it's so bad now it couldn't possibly get worse.

Any Storm In a Port

What must this PORTend? We shall see. In spades.

Yesterday I got my port installed. Today I am sore. Wonderful nurses and Dr., though.

The most wonderful nurse sat down with us (me & my mother-in-love) ahead of time to explain it all in detail. Just to supplement those middle-of-the-night Google/Youtube meanderings, no doubt. What struck me was a port sample (No, not the wine! Although that's an idea.🍷) with a flesh-colored rubbery patch over it which simulates how an implanted port might feel under the skin.

After that, I was wheeled in to the Twilight Zone. Actually, twilight sleep, although there doesn't seem to be much difference. The best part of that was finding out (between snoozing) that they all had quite a sense of humor. And, for the record Dr., I do NOT snore!

The drama began once we were home and eating a late lunch. I had almost completely bled through my little gauze patch, so it was back to the Dr. we went. Apparently there was a bleeder in the top incision that had flowed down and soaked the gauze on the lower incision. They took it all apart, glued it all back together, applied cold packs and PRESSURE. No ribs were cracked. LOL. I was told not to bend over (again) for 24 hours. And if that little vein bled again, he would probably have to put in a suture.

Well, it's now the next morning and so far, so good. Well, except for being freakin' SORE. Tylenol is only mildly effective.

Today it's an EKG. So glad it's close to home and won't involve a lot of time nor pain. That's pretty much my plan for the day. An EKG. Then come back home and...sleep, probably.

Tomorrow is the PET scan. I'm supposed to stop eating everything except basically vegetables, proteins, and fats starting 24 hours ahead. Which means I have about 10 minutes to finish the tea I'm drinking as it contains a splash of (fat-free) half & half.

Things to look forward to: A shower (2 more days), swimming (9 more days), eating without considering the upcoming PET scan(1 day).

Gosh this is kinda' hard to write. I think my brain is still recovering from the Twilight Zone.

I SLEPT!!!

Aaaaahhhh...it's amazing what complete exhaustion can do for a girl! Got some SLEEP!!! Great day today. Got some CBD gummy drops to help with sleep for tonight and as needed. Got some pot-inspired dog treats for our ailing almost-teenaged dog, as well. She'll be 13 in 2 weeks! But I digress. Gnarly pot shop. Or whatever those stores are calling themselves these days. Hadn't really ever been to one before. Good experience. Hope the gummies work. If so, I'll be back. Really knowledgeable staff, too. I guess I'm so impressed 'cuz this is all new to me. I mean, I was a good girl (to an extent) in the 70s/80s. I CERTAINLY did NOT go to head shops back then! Horrors! LOL.

We all got pedis today. Me, hubby(!), and daughter. Daughter got a mani, too. It was fun! Hubby and daughter also got haircuts. Not me. I'll be bald soon, so I saved some money there.

So, between running errands and pedi, etc., I got all of my upcoming appts. scheduled (for now): the port installation (OMG and ew, gross!), the heart check, and the PET scan (another scary thing as well as claustro-inducing). The port is really the one I'm dreading the most. I mean, how gross to have some object implanted under your skin? So I guess it's a good thing that that will be taken care of first. And that I'll be knocked out, too. Well, twilight sleep.

It occurs to me that if I hadn't slept well last night then all of this might be overwhelming. So thankful I got in those Zs. It makes a HUGE difference. 😄

Now all I have to do is remember all the dietary restrictions for the port and the PET (not that there are that many, but still...), but not the heart check. I'm so confused. I wonder how my brain will be once I start chemo. Maybe it will be an improvement.

Repose, Rest, Shut-Eye, Slumber, Snoozing, Forty Winks, Siesta...

sleep

slēp/

noun, 

1. 1.

   a condition of body and mind such as that which typically recurs for several hours every night, in which the nervous system is relatively inactive, the eyes closed, the postural muscles relaxed, and consciousness practically suspended.

Oh. Is THAT what it is? I had almost forgotten. 😪

So, yes, it was the 4th of July yesterday. And, yes, here in exclusive Pyro Acres they were out blowing up the neighborhood until...well, I think I heard the last one at about 3:40 this morning. The dog and the guinea pig seem to have made full recoveries. Of course, they just seem to fall asleep whenever they please. What's their secret? I, as per usual, was up until past sunrise. Nice. (Not).

I had tried some new sleeping pills and they just seemed to make my "itchy-twitchies" worse. Instead of restless legs syndrome I seem to have restless body syndrome. With itching. Fun times. Anyway, turns out these pills are actually generic benadryl. And they somehow made me itchier and twitchier. (*sigh*) Which sucks as one would think that benadryl would have the opposite effect. 

SO... "Marijuana oil!" more than one friend has said. So, we shall check that out later today. The shop is conveniently located next to our vet. So perhaps the dog could get a mani/pedi whilst we're perusing the, uh, weeds. 

My wonderful husband ran some errands for me today. How lucky am I? Went to pick up my mammogram and ultra-sound/biopsy records from the imaging place so that I would have them for my upcoming PET scan. And he ran to Walmart to return something AND to AAA to order me a new license plate. I had gotten pulled over on my way home from my biopsy last month (super timing!) and given a fix-it ticket for my missing front license plate. After driving around without it for two years, fate picks THAT particular moment, when I'm behind the wheel and in a mental fog looking forward to home and wine after the trauma of biopsy, to have a cop pull me over. 😩

So...PET scan. Wow. Lots of dietary changes in order to prep.  48 hrs. before the scan, do not get chilled. (What? Why? Not likely as it's going to be over 100°). 24 hrs. before, no liquids except for water. No dairy, no starch, no sugar, no gum (!), no smoking. OK foods: meat, fish, chicken, pork, eggs, tofu, oils, butters, margarine, fresh leafy greens, onions, avocados (hooray!), cucumbers, broccoli, no dressing other than oil & vinegar, and plain or lightly salted nuts (yay). 6 hrs. before the scan, only water. It'll take 2-1/2 hours. And are you claustrophobic? That's a shame. They didn't really say that but...I guess if I have a nervous claustro-breakdown, I'll get to escape the evil scan tunnel that much sooner. 

One more thing to look forward to is tomorrow's 7:30 a.m. blood draw. Hopefully I'll remember my doctor order this time. And hopefully I'll sleep before then.