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?)