Chemo Pimples :-/

I thought I got over breakouts when I exited puberty.

Well, that’s a lie. It seems I have never been completely without breakouts, but they certainly haven’t been puberty level bad in a long, long time…like 20 years a long time.

Until now.

Thank you, chemo. Thank you for the chemo pimples.

What is a chemo pimple? I’ll tell you. (And no, I promise this isn’t going to be a gross post…well, any more gross than talking about pimples is in general.)

So, chemo pimples sort of look like regular pimples, only they are hard and they hurt and they can’t really be popped. They feel like a little grain of sand under the skin. And they are little red devils from hell.

And they turn up everywhere!

I have them on my face, my forehead, my head, the back of my neck, my back, my chest…everywhere.

They show up near the end of week two, beginning of week three, of each of my chemo cycles, so about 2 weeks post-chemo.

They don’t respond to acne treatment, these mutant chemo pimples. And I have tried to pop them, but even if I make progress on that front, nothing really happens. They don’t go away.

It figures they show up right when I start to feel well enough to rejoin society.

Concealer, foundation, scarfs looooooow on my forehead…

Gah!

I mean come on, chemo…..we’re already bald, pale, and generally feel like garbage, gotta make us pizza faces, too?

So there…that’s my rant for today. ❤

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Peanut Butter is Kind of Cool

Why, you ask?

Because it kind of, sort of, almost (but not entirely) masks the metallic taste in my mouth the week after chemo.

So, one of the other side effects that irks the heck out of me is the metal mouth taste. It ruins the taste of food and is all together unpleasant.

I noticed the other day that when I’d eat Reese’s Puff cereal, don’t judge, the metal taste wasn’t as persistent. It was still there, but it was covered up a bit. So I proceeded to eat the heck out of the cereal. First, it tastes like it’s supposed to, and second, it kind of hid that metallic taste. Win, win.

Of course, I can’t whip out a bowl of Reese’s Puffs every time I want to get rid of that taste, and (unfortunately) it doesn’t really have a lasting effect on the metal mouth.

What’s the alternative? Peanut butter! Straight peanut butter. Right out of the jar, with a spoon. Yummo.

Again, it doesn’t eliminate the taste, but it masks it pretty well. And the straight peanut butter is thick enough that it lasts a bit longer than the Reese’s Puffs taste. It helps before bed, because there is nothing worse than trying to sleep with a metal taste in your mouth!!

And mouthwash, gum, Biotene, etc. does not help at all. If anything, mint makes it worse. So I do brush before bed, but after rinsing that mint taste out, I opt for the peanut butter chaser!

Hot Flashes Suck

One second I’m cold, the next I’m hot. One minute I’m comfortable, the next I’m crawling out of my skin.

Hot flashes might be one of the most annoying chemo side effects.

Why? Why is something that seems so non-evasive in comparison to other side effects so obnoxious?!

Well, for one, because they happen all. the. time. All the time. Day, night, awake, asleep, home, out, etc. All. The. Damn. Time. And the lovely weather here in South Carolina isn’t freaking helping. The temperatures fluctuate between 50 and 70, day and night.

Should we have the heat on? The AC? Nothing? Fans? Blankets? What thickness of blanket? Sleep pants, a night shirt, shorts? It’s so uncomfortable! What I think will work might work for about 20 minutes, then I need a complete readjustment. Then by the time I’m comfortable again, my stupid internal temperature shifts and I need something else. But it’s like I don’t have the hot flash until I’ve adjusted myself, until it can be considered inconvenient. “Oh what perfect timing for a hot flash!” said no one ever.

So yeah…layers. Lots and lots of layers. Day clothes, pajamas, and even bed sheets. Everything must come in layers.

4 down, 2 to go!

The finish line is near! I should have chemo again December 18 and then January 8th, and then I’ll be done.

Yesterday was good. Same old, same old. I feel pretty good today. Don’t want to jinx anything so that’s all I’ll say.

The counts for my liver were a little higher than last time. Could be the chemo, could be the two glasses of wine I had last week, could be the fatty foods. We’ll watch it and I’ll get back on track. I really just let myself go hog wild last week for the holiday, and I don’t regret it one bit. I had a great time and enjoyed the heck out of food.

I’m currently hanging out in the waiting room, getting ready for my Neulasta shot. Then I have to head down to campus to meet my professor to see where I’m at and what he thinks I can do as far as finishing the course, and whether I’ll be able to start the second course in the sequence in January. I sure hope so. Of course, I also have to deal with surgeries in the Spring and Summer semesters. What a pain in the neck!!

And speaking of pains in the neck…I so badly need to visit the chiropractor!!

That’s all for now! Shot time.

I Need a Mental Health Day

Before cancer, I used to take for granted the ability to do what I wanted, when I wanted to do it. If I wanted to go window shop at a store, I could go any day, any time, as long as the store was open. Yeah, I had to shower and get dressed if it were one of my lazy days, but that was a small price to pay.

Nowadays, 90% of my time is spent feeling some degree of crappiness.

About 100% of the time, I have to be conscious of where bathrooms are in case I need to make a run for it due to my wonderful digestive tract and its inability to be regular. In addition to that, I want to surround myself with people I feel comfortable enough with to make that mad dash, if need be. It’s one thing talking about it candidly here, it’s a total other thing being in public, making that face, grabbing my stomach with my eyes darting like mad for the nearest restroom, and praying for a vacancy as I run like I’m being chased by a bear.

Other times, I feel foggy and fatigued. My brain doesn’t quite want to work properly, and I lose track of conversations I’m an active participant in. Even when writing these posts, it takes me a while. I write a little, re-read to see if what I wrote makes sense, lose my train of thought and wonder where I was going with whatever I was writing, and so on.

Sometimes I feel nauseated. Granted, it doesn’t last long thanks to the magic of Zofran, but it’s still there often enough and isn’t a comfortable feeling. Along those same lines is the lack of appetite/need to eat everything in sight – all at the same time. Imagine how fun that is for someone who likes to eat. I want to eat, but I can’t really eat, partly due to nausea, partly due to not being able to taste things properly, and partly because it exits almost as quickly as it enters and there’s just no fun in that. But if I don’t eat, then I get nauseated from the empty stomach. Damned if I do, damned if I don’t. This last cycle was better with food, and I think that was mostly due to the fact that I was on point with my Zofran consumption. Every. Eight. Hours. Things still tasted sort of funny or different at times, some textures were odd, but I could eat.

With all that being said…I don’t want to do anything.

Yeah, I go to work and school when I feel well enough. But usually, even on good days, I’m too fatigued to do anything else afterwards, even grocery shop or clean the house. The regular household stuff typically gets taken care of on the weekend when I have more steam. Brad takes care of some of it, but I have a need to contribute, so I do it when I can. I like doing laundry and vacuuming, straightening up the house, etc. I enjoy it because it’s normal, and I try to do what’s normal as much as I can because I’m not a complete invalid. Sure, there are days when I don’t get out of bed except for getting something to eat and using the bathroom. Visit me during week two of my chemo cycle and you’ll most likely witness that. But when I have the energy, I’m up cleaning or organizing something because that’s normal to me.

But leisure activities? Those barely even happen for me.

We go to trivia on Friday nights – mostly because it gives me the chance to see my parents outside of them chauffeuring me to doctors appointments, it’s completely no frills, and it’s entertaining and a chance to exercise my brain. I went to a book event a few weeks ago – I was miserable but it was nice to get out, be a nerd, see people I hadn’t seen in a while, and meet people I hadn’t yet met in person. Went to a dinner for Brad’s work because free food, ok? Spent time with my family over Thanksgiving. We actually realized it was the first time our entire immediate family was all together, ever, which was pretty cool as someone was always missing for one reason or another. I trick-or-treated with my niece and nephew, sister- and brother-in-law on Halloween. Hosted a couple of games at home this football season.

And that’s about it. That’s pretty much the extent of my leisurely activities.

I often can’t do anything because I don’t feel well, or I don’t want to because I’m tired and would rather stay home so I’m not the tired, little fuddy-duddy in the corner not talking to anyone. I often can’t keep up with conversations as I’m suddenly staring into space and not paying attention right in the middle of a sentence.

Awkward…

So I need a mental health day. A moment to feel sorry for myself because this cancer crap is for the birds. It doesn’t just affect your health, it affects your entire existence.

Can’t do this.
Can’t do that.
Finally feel well enough to do that, but you can’t because of this, that, or the other thing.
Feel like crap because you’re constantly saying “no, sorry, I can’t, not today, I don’t feel good” when asked to do stuff.
Getting used to that metaphorical perch in the window where you wave good-bye to everyone who gets to do fun stuff and live their lives while you’re at home, physically feeling like some form of garbage.

Pity party, table of one.

I really shouldn’t be whining. Other people have it far worse than I do. In a year, this will all be nothing but a bad memory. Some people have to live with whatever ails them all their lives.

But, damn it, today I need to whine.

I think I’m coming off the high of having had two good weeks this cycle (since I pushed chemo back for Thanksgiving), and getting ready for the doom and gloom that is chemo day – Monday.

Anyway…I’m going to curl up on the couch with a book (an audiobook because I can’t friggin’ read a book to save my life these days) and eat my pizza and cinnamon bread. Tomorrow is a new day, and I think I might put up my Christmas decorations.

Good news!!

Sorry for the radio silence over the last week or so. I haven’t had anything new to report since the bronchitis. I’ve just been laying low, getting well, and enjoying my good days.

I had my ultrasound with Dr. JB today, as well as my consult with the plastic surgeon, Dr. H.

First we did the surgical consult and talked about the lumpectomy, mastectomy and reconstruction stuff. Now remember, I’m not a medical professional and may not use the correct terminology here, but hopefully you’ll get the gist of it.

The lumpectomy would take place about 2-3 weeks after my last chemo treatment (Jan 8). Recovery would be about a week, I believe it’s an outpatient procedure.

About 3 months after that is when the mastectomy and reconstruction would take place. This would involve about a 5 day hospital stay and about 6 weeks of recovery. As I mentioned in a previous post, they can use belly fat (which would be my choice over artificial implants), which would essentially add a tummy-tuck to the procedure. Using belly fat eliminates the need to return to the plastic surgeon in a few years to have the implants/spacers replaced. Dr. H talked about what he’d do, and that includes transplanting arteries to keep the fat tissue alive when they move it to the breast. They also transplant a piece of skin attached to the fat, sort of a lemon shape, that will stay on the outside of the breast and be monitored to make sure the tissue stays alive. I guess if that skin dies, it’s an indication that the tissue has died as well. After a certain amount of time (I don’t remember what he said), they’ll remove that skin from the outside. Please see my horrible drawing below, which is sort of like Dr. H’s drawing at the appointment today. That’s what it would look like when the skin is there, after they remove the skin, it would just be a line-like scar in that same place.

So, the options are still just the lumpectomy, lumpectomy and a single mastectomy, or lumpectomy and a double mastectomy. The lumpectomy alone leaves me with the highest risk of new cancer in either breast, and recurrence of the existing cancer in the right breast. Single mastectomy reduces the risk of new cancer in that breast, but doesn’t eliminate it, and does nothing to reduce the risk in the other breast. Double mastectomy reduces the risk of new cancer in both breasts significantly, but also doesn’t eliminate it entirely.

So, regardless of what I choose to do, there’s still going to be risk. It’s likely I will face this again in the future, but we’re talking many many years into the future when it’s possible there’s some new and (hopefully) less evasive treatment.

So after the surgery talk was over, we did the ultrasound.

And…drumroll please…

There was nothing there!! The cancer is gone!

Yes, we can still feel JP, but he’s not showing up on the ultrasound, which means he’s blending with the other we can also feel that he’s much smaller than he was in the beginning. He was very apparent on the first ultrasound, so this is great news!

I still have three rounds of chemo left, the next one being Monday after my little break for Thanksgiving. Why more chemo if the cancer is gone? Because it will grow back. So before they do the lumpectomy, they want to shrink everything as much as they can so they can get the best margins.

Lots of information today, lots for me to think about. But today we’re celebrating that I kicked cancer’s ass. 😉

Two Days Post Chemo And I’m Feeling Good!

I’m so afraid saying that “out loud” will jinx it, but I’m just so darn excited! 

I usually feel weird the day after chemo. Last cycle I was up all night the night of chemo. That isn’t how it’s been so far this time. I have been sleeping fine. I don’t feel weird. Brain fog hasn’t set in. I feel, dare I say it, normal.

When I went for my Neulasta shot yesterday, I even told the MA that if it hadn’t been for the drowsiness of the Benadryl the day of chemo, I’d swear the IV wasn’t connected on Monday and I got no drugs at all. 

Maybe my body is getting more and more used to it? That would be great, especially if “hell week” isn’t as much he’ll as it has been the previous two cycles. Would be nice to not be out of commission all week!

Again, I totally don’t want to jinx it, but it’s hard not to get excited! I want to feel normal as much as possible and these last couple days have been a blessing!

I have had some constipation and heartburn, which I believe I had last cycle, and are nothing to complain about versus the other side effects I’m usually feeling right about now. Pepto and mints are alleviating some of that. My appetite is totally fine, and my energy level has been great! 

So I feel good, and I hope it lasts!

Two Days Post Chemo And I’m Feeling Good!

I’m so afraid saying that “out loud” will jinx it, but I’m just so darn excited! 

I usually feel weird the day after chemo. Last cycle I was up all night the night of chemo. That isn’t how it’s been so far this time. I have been sleeping fine. I don’t feel weird. Brain fog hasn’t set in. I feel, dare I say it, normal.

When I went for my Neulasta shot yesterday, I even told the MA that if it hadn’t been for the drowsiness of the Benadryl the day of chemo, I’d swear the IV wasn’t connected on Monday and I got no drugs at all. 

Maybe my body is getting more and more used to it? That would be great, especially if “hell week” isn’t as much he’ll as it has been the previous two cycles. Would be nice to not be out of commission all week!

Again, I totally don’t want to jinx it, but it’s hard not to get excited! I want to feel normal as much as possible and these last couple days have been a blessing!

I have had some constipation and heartburn, which I believe I had last cycle, and are nothing to complain about versus the other side effects I’m usually feeling right about now. Pepto and mints are alleviating some of that. My appetite is totally fine, and my energy level has been great! 

So I feel good, and I hope it lasts!

Two Days Post Chemo And I’m Feeling Good!

I’m so afraid saying that “out loud” will jinx it, but I’m just so darn excited! 

I usually feel weird the day after chemo. Last cycle I was up all night the night of chemo. That isn’t how it’s been so far this time. I have been sleeping fine. I don’t feel weird. Brain fog hasn’t set in. I feel, dare I say it, normal.

When I went for my Neulasta shot yesterday, I even told the MA that if it hadn’t been for the drowsiness of the Benadryl the day of chemo, I’d swear the IV wasn’t connected on Monday and I got no drugs at all. 

Maybe my body is getting more and more used to it? That would be great, especially if “hell week” isn’t as much he’ll as it has been the previous two cycles. Would be nice to not be out of commission all week!

Again, I totally don’t want to jinx it, but it’s hard not to get excited! I want to feel normal as much as possible and these last couple days have been a blessing!

I have had some constipation and heartburn, which I believe I had last cycle, and are nothing to complain about versus the other side effects I’m usually feeling right about now. Pepto and mints are alleviating some of that. My appetite is totally fine, and my energy level has been great! 

So I feel good, and I hope it lasts!

The Cost of Chemo

I’ve debated talking about costs for a little while now. I may have mentioned something back when I was having the scans done, about how expensive an MRI or a CT scan were, but I didn’t want to make it seem like I was looking for sympathy or a hand-out. I’m not. I have insurance, good insurance, that is covering my medical expenses. I’ve had to pay some towards the deductible and co-pays, but it’s such a small percentage of the entire cost of my treatment.

It’s kind of funny because when I enrolled in my husband’s health insurance plan, I complained about the monthly cost. We’re basically paying the monthly premium, without a discount, for me to be added to the company plan. It’s not terrible, especially since Brad’s coverage is free as an employee. While it is still more than we’ve ever paid for the two of us to have insurance, it’s really not that bad and I know there are people out there who have it much, much worse. I just had one of those “holy crap” moments when I saw the dollar amount and griped about it for a minute. We all like our payroll deductions to be at a minimum, you know?

Anyway…I just received the EOB (explanation of benefits) from my insurance provider for my first chemo cycle. This includes the two chemo drugs, two hormones, pre-meds, doctor visit, nurse care, labs, and the immune shot that I get in a cycle. Different people, different cancers, have different cocktails, providers, protocols, etc. so the cost isn’t the same for everyone – some may be higher, some may be lower.

So the amount billed to my insurance for my first chemo cycle, the items mentioned above, was $57,000.

Let’s put that into perspective for a moment…the median annual household income in the United States in 2016 was $56,516. Yeah. I racked up that expense in one day.

I’m having six rounds of chemo. That’s around $342,000 total (future treatments may be less since the first round did include a loading dose, so I’ll update when I get the next EOB).

And that’s just the cost of the chemotherapy treatment (one of the chemo drugs alone is $21K!). That’s not including all the diagnostic scans I had done in the beginning. It does not include the port surgery. It’s not including the six week ultrasounds and echo cardiograms. It doesn’t include surgery to remove the mass, should I need it. It’s not including the hormone therapy I’ll need over the 34 weeks following the chemo. It doesn’t include the surgery to remove the port once I’m done. That’s just the chemo.

That’s just…wow.

I am so thankful I have insurance that’s covering this. I can’t imagine the struggle for people without insurance. I’m sure there are programs out there for those individuals, but they still have to worry about it. I don’t have to worry about it, and I’m grateful for that.

When I started this journey. I had no idea how much all this would cost. I assumed it would be expensive, but I didn’t know how expensive. I didn’t know the cost of a scan, let alone chemo. I went into it blind, knowing that I had insurance that would at least cover some of the expense, and I’d find a way to cover the rest. It was cancer for crying out loud, I’d start selling off the good body parts to pay for the damn treatment. One of the financial counselors at my oncologist’s office applied for some funding for me to help with some of the out of pocket expenses for treatment, it was for five thousand dollars, and she said that when that ran out (if granted), there were more funds to apply to. I remember asking her if the chemo was going to cost more than what the grant was for. Ha. I had no clue! No clue at all. And I never asked, because I honestly didn’t want to know. I didn’t want to have something else to be anxious about.

So yeah. There you have it. ‘And I’d thought the scans were expensive…

Things to note:

  1. Yes, my insurance was billed for that amount, but because of the agreements insurances have with medical providers, there are allowable amounts and all that stuff I don’t understand, so the amount my insurance would pay (and what would be extended to me had I not already met all my maxes this year) is less than that.
  2. This isn’t a complaint post. I’m not complaining. The treatment is working. JP is shrinking. I can’t wait to see how much smaller he is on the ultrasound next week!