Fever

I fell asleep early last night. I felt very achey and exhausted, so I passed out. I checked my temperature, and I didn’t have a fever, but I had taken some Tylenol for the aches.

I woke up several times throughout the night to use the bathroom. I swear, it was like I had drank a swimming pool full of water. One of those times I checked my temp and it was 100.5. Yikes! Might not seem high, but for someone whose temperature is usually “normal” around 97, it’s kind of high. I was so hot, but so cold. Achey…traditional fever stuff.

It was kind of weird since I hadn’t had a fever before I was gutted yesterday. I took my second dose of antibiotics this morning and no Tylenol, and the fever went down. It’s around 99 now, but at least it’s going in the right direction and the antibiotic is doing its job.

I was going to take a pic this morning, but dear lord it looks nasty. It’s just very raw and red and yellow…thank goodness for antibiotics.

I’m also pretty sore around the incision area. I called out of work today, which I hate, but I knew I’d be useless with a fever and body aches. I’m trying to spend the day in bed so I’m not putting pressure on my tummy area. It just hurts to get up and down, up and down.

Oh, and the solution I use on the gauze before putting it in the hole smells like bleach. Why? Because it is bleach…I give up trying to understand some of the weird stuff I’m told to do.

Anyway, I’m just laying around and reading. I’ll probably nap again here soon, but it’s hard to get comfy on my back when I’m not completely exhausted, so we’ll see how this works.

Wish me luck for tomorrow! I hope it’s a better day.

More fluid…

This week, Dr. H took out about 80 CCs combined from both sides. Good news, it’s less than last time! Bad news, there’s still fluid. Not much we can do but wait. Wait and wait and wait some more. There’s nothing I’m doing or not doing, it’s literally a waiting game at this point.

He said everything else looks good, so that’s good. I’m still hopeful that we’ll be on target for my final surgery in September. My outer breast tissue/skin just needs to finish healing. It’s getting there.

I’ve been on a movie kick lately. I watched Thor: Dark World and The Longest Ride and The Best of Me, all through Amazon Prime. I’ve also read a couple Karina Halle books. I’ve been busy with appointments and work, so I’m just enjoying these quiet and brainless moments.

Ohh, but I’m not sure if I mentioned my wonderful day on Friday and I just have to! For those of you who don’t know, I work with kids who are on the Autism spectrum. I am a Registered Behavior Technician, and I do ABA therapy (applied behavior analysis). So I work with kids and have several therapy sessions each week. On Fridays over the summer, the company has arranged group social events for the kids who have full-day availability on Fridays, and whose parents sign them up. One of the stops for our Friday social was The Little Gym, and it was amazing! The kids had such a fantastic time, it made my heart smile. Seeing them in their element like that, it was just the absolute best. I just had to share.

Little oncologist update: I had my Lupron shot Monday. My arm is still a little sore. Waa. I didn’t see Dr. YB, I only see him on infusion day, so I didn’t get to give him an update on the symptoms I was whining about last week, but I’ll share here. I have only had one hot flash episode, and it wasn’t really a hot flash, it was like it wanted to be a hot flash but couldn’t quite get there. And it lasted a while…it kept me awake. Annoying. But other than that, the drugs seem to be working. Yay!

I get asked occasionally if I mind if people share my blog with their friends or family, and I don’t mind at all. Please feel free to share this with anyone who may want to read it. I know there’s not much going on here lately (thank God!), but some of the past posts may be of value to someone.

Day Full of Docs

It’ll be nice when all this slows down. I have a doctor’s appointment every week, and it’s frustrating .

When I was leaving my first appointment of the day and trying to schedule a future appointment, it was hard to accommodate the time because of work. I may be able to adjust or abbreviate my sessions, but I don’t want to do that because it creates a domino effect. I cut one short by 30 minutes, then I have to add 30 minutes somewhere else. I cancel one, I have to make it up another day. So the easiest thing to do is to schedule the doc around work.

I was drained again by Dr H, about 45 on each side. The right side had more this time than last time. I’m probably going to have to get drained again next week, blah blah blah. Next week I’ll go to his office in Mt. Pleasant, instead of the office he shares with Dr JB on Monday mornings, which is fine. It works out well with my schedule that way.

I went to the oncologist next for my infusion. I’m on cycle X of 17. Almost finished! Then we’ll talk about where to go from here as far as prevention and future treatments. I asked Dr YB about my hot flashes, issues falling asleep, and my feet.

Yep, you read that right. My feet. Why? Well because they have been so incredibly achey since around January! I guess it could have been going on for longer, but I was so inactive prior to that due to the chemo, and I was feeling so many other things, that I might not have even noticed it was an issue, or just blamed it on my inactivity. Anyway, once I’m walking, they’re fine, but it’s after I’ve been laying or sitting or driving and I get up and try to walk that they ache and hurt. So I figured it wouldn’t hurt to mention it, and see what he advises.

Dr YB wrote me a prescription for oxybutynin, which is actually a bladder medicine but works for hot flashes. One of those random off-label uses for drugs. I also got a refill for my letrozole. As for my feet, he recommended trying Aleve for 5 days to see if that helps. He said that with my hormones being messed with, it’s possible that’s why I’ve been having trouble falling asleep, so he said to give it some time and see how it goes. My nurse also suggested no caffeine after noon. I don’t have a lot of caffeine as it is, just the occasional sweet tea (since the soda I drink is caffeine free – but I rarely drink soda anyway).

So we’ll see what happens over the next few weeks until I’m due for my next infusion!

Drains and Pains

A little update…tomorrow I have an appointment with my plastic surgeon, so I’ll probably have more news then, but venting is cathartic, so here comes random stuff.

I’m over these drains. Over them. I’d kill to be able to lay on my side, even if only for five minutes. My butt is over all this supine nonsense. They’re still putting out about 30-40 CCs a day each, so I’m doubting they’ll be removed tomorrow. Yay. I can’t remember the magic number from my doc, and the web ranges anywhere from 30-50 in a 24 hour period. So my hopes are not up for removal. The most frustrating deal with the drains is accommodating them. I have to be able to clip them or tuck them somewhere. It’s annoying.

I’m taking pain meds less frequently, so I’m starting to feel more soreness in my chest and tummy. It’s more of a discomfort than anything else.

And it looks like the part of my tummy incision we’ve been watching, the spot where Dr H said I’m most likely going to have necrosis, seems to be living up to the hype. I honestly can’t tell all that well because the incision still has the suture tape over it, but it is peeling a little bit in some spots, and from what I can tell from peeking underneath the tape in that specific spot, is that there’s necrotic looking stuff happening. And that’s about as technical as I can get, since I literally have no idea what I’m talking about. I happened to Google images for “necrosis” and “tummy tuck” (which I don’t recommend ever doing, ever) so I’d have an idea of what to look for, and basically it’s a break in the incision, like an open cut, and there’s yellowing of the tissue. If you don’t heed my warning and do Google the aforementioned terms, I swear on all that is holy (hole-y, get it, har har), my stomach does not look like that. The spot I can see is about an inch worth of the incision, if that, and like a millimeter wide. It’s like a dash, not a gaping hole the size of Rhode Island.

Anywhoo, all signs point to no swimming for me when I go on vacation in a couple weeks. Or when I step out in the backyard… Totally sucks, but whatever. I can dip my feet in and I guess that’ll do for now.

So I’m a little whiny and mopey because I feel like this will never, ever end. Then I read an article on my local news app that a news anchor and a photojournalist from a Greenville County news station were on route to do a story in NC when a tree fell on their vehicle and killed them both. Sort of puts things in perspective. I survived, you know? This is just the bumpy road back to my normal.

Thoughts and prayers to the families and friends of those two individuals.

Post-Op: Part II

Still a little drowsy from the meds, but I just had dinner so I’m feeling a little surge of energy and alertness, so I thought I’d try to squeeze in another post.

I had a catheter. They inserted it while I was unconscious, so that’s cool, because apparently that’s what’s uncomfortable about it – having it out in while you’re awake. So yay. It was kind of neat to just be able to pee without thinking about it. There were periods of discomfort, mostly due to the positioning of the drainage tube. It was uncomfortable when they pulled it out, too, but it’s not like they yanked it. They did it gently.

I’ve gotten up to pee three times since the catheter has been removed. Standing up is uncomfortable because I want to use my arms to push up and stabilize myself, but I can’t. I also feel like my abs are going to jump out of my body. I think it’ll be much easier to do once I get over those things. The first time I tried to sit to pee was a struggle, but the second time I remembered my squats and it was a piece of cake. Laying down hurts when I engage my abs. The nurses hold my back and lower me, but it’s nearly impossible to just release my abs and let them do the hard work. So that’s another thing I need to get over.

The last thing I remember before the surgery was the anesthesiologist saying he was going to sedate me a little bit to do the nerve block, which I remembered from the lumpectomy. He inserted the medicine into my IV and it was game over. I vaguely recall telling Dr H about my successes with losing inches around my mid-section, and saying something about wanting big boobs. That’s about it! Then I woke up in recovery. So while the world was passing hours upon hours, I was in an amazing time warp!

And I do have big boobs apparently. Double the size. Yowza!

Anyway, getting groggy again so I’ll talk to you later!!

I also apologize if there are typos in any of these post-op posts. I’m not proofreading, and I’ve only got one eye open half the time. Ha!

TTFN

Post-Op: Part I

I made a list of the bazillion topics to cover so I don’t completely flake out the way I did with the lumpectomy. It’ll be broken down into different posts as I feel the umf to write about. I have a little burst right now, so I’m going to try to cover some stuff. It may be totally out of order from the actual series of events, but I’ll include everything I remember!

First off, everything went great. Everything looks good. All is well. So yay for that. The mastectomy and the flap took about 8.5 hours total. Unfortunately the part of the hospital Brad was waiting in was a cellular dead zone, so he didn’t get updated. He would just have random missed calls, but the phone never rang.

Pain has been moderate. I had the same nerve block as I did with the lumpectomy, at the upper shoulders, and that has begun to wear off. Pain is being managed with pain killers and I’m doing ok with all that. I also have a nerve block, still do, at the abdominal incision.

I’m also on a muscle relaxer to help with the ab, back, and chest muscle tension. Those are the areas I’m feeling it the most. And of course an anti-nausea med.

I started with an IV, which I still have but they’re not currently using it. I was getting the meds intravenously, but this morning I was able to switch to pills, which is lovely because any time the meds went through the IV, it burned!!! I was also getting IV antibiotics last night into this morning. I haven’t gotten any pill antibiotic yet today, but I may be done with that now anyway.

Since I was horizontal for so long, I had some crud in my chest, so I’ve got to use this little breathing thing to help break that up.

I have a lot of gas/bloating around my stomach area. So I’ll be passing quite a bit of gas (no surprise there!), and it will dissipate more and more each day.

I have drains: 2 for the breast area and 2 for the abdomen area. The breast area has had less liquid than the abdomen, and part of that is just due to gravity. I may go home with all 4, or I may go home with fewer. It just depends on how much is coming out.

Ok, so I’m pretty tired now! I’ll update with more later or tomorrow!

Recovery

I realize that I pretty much glazed over my post-op recovery from the lumpectomy. Honestly, it wasn’t all that bad, so I didn’t think much of it.

I took some pain pills the first week, and most of the time it was to help me sleep through the soreness and knock me out enough to not roll around since I had to stay on my back. I’m a side sleeper, and sometimes I wake up on my stomach, and since those positions were a no-go, I wanted to make sure I was out. So I took the pain medication the first couple days during the day, then the rest of that first week at night only.

The incision from the removal of my lymph nodes under my right arm hurt more than my chest did. I seriously couldn’t feel anything in my chest for days. Maybe that was leftover numbing from the nerve block? Not sure. I think I talked about the nerve block and how it was left in, so I had two little bocci balls full of numbing stuff in little sacks to carry around. Brad got to remove those wire catheters from my back and was so grossed out, it was fabulous. Apparently they were a good inch deep.

Anyway, I was surprised my chest didn’t hurt more. Occasionally there was a little zap of pain, but it only lasted a second. It was tender if bumped, which I obviously tried not to do, but I’m certainly not graceful. There’s still the slightest bit of tenderness.

I had to wear a surgical bra. Picture the most unattractive sports bra on the planet made of a heavy cotton gauze. Sexy! A few days ago, I finally bought a few front closure, wireless sports bras that are pretty loose. They came up when I did an Amazon search for surgical bras. Surgical bras came up, too, but they didn’t look as comfy. So I’ve converted to the sports bras. 24/7. Twenty-four seven.

Sigh.

My chest still looks like Franken-boobs. It’s healing, but it takes time. There’s still scabbing, but at least the steri-strips are gone (I may have ripped them off in the shower at 2 weeks post-op because I felt that was long enough, they looked gnarly (mostly because they had marker on them from Dr H’s artwork), and they were already half hanging off. I don’t think the scarring will be too bad, but by the time this heals, I’ll be prepping for the next, so there will be new scars, scabs, and steri-strips!

What else?

I still have some neuropathy in my toes, and I’ve had some swelling in my feet and ankles. Both happen more when I’m sitting a lot – so at a desk on office work or school days. I’m trying to be conscious of keeping my feet up when I’m planning to sit for long periods of time. Surprisingly, the days spent playing with kids and running around doing errands are the better days because it keeps my circulation going. Brad bought me some copper socks for the swelling, but I forget to put them on until after I’m already swollen. Ha.

I think that’s pretty much is it as far as recovery goes. It really wasn’t that bad. I was driving a week later and moving around just fine. I feel fantastic and am so glad I don’t have anymore chemo to make me feel crappy again. In a little more than a week I’ll have my next Herceptin injection and find out the date of the mastectomy. I might not have anything to say until then, but I’ll try to think of something!

Bronchitis?!

As if I need more medical excitement in my life.

So yeah, my cold-like symptoms have persisted and yesterday Brad called the oncologist for me (I had completely lost my voice) to see what I could take to alleviate the coughing, congestion, etc. They said it sounded viral, and recommended I call my primary care doc. So I went to the nearby Roper St. Francis Express Care (a super nice doc-in-a-box type place that is also networked with my oncologist-added bonus is that it’s like 2 minutes from my house).

So now I have cough syrup and an antibiotic to add to my medicine cabinet. The antibiotic is sort of preventative. Bronchitis is viral, so an antibiotic is typically not needed, but I’m a special case and we take added measures.

Oh yeah, and when I went for my CBC blood draw on Monday, everything was fine (why we knew none of the sick stuff was due to an infection). Since I was feeling pretty blah and not getting a lot of fluids in me from being sick and having diarrhea, I got some fluids while I was there.

So yeah…coughing, no voice, still have that horrible post-chemo taste in my mouth (and I’m salivating like crazy, which is just great with that taste!), I’m doing fabulously!

It’s also raining outside, which sounds wonderful. I love to listen to the rain.

So I’m hoping I feel well enough to go to class tonight, but we’ll see. I can’t take the cough medicine and drive, so there’s that. I also can’t speak…

Saturday I’m heading to Columbia for a book signing! I’m super excited since I couldn’t go to the one last weekend, so I’m hoping I feel at least 80%! We’re just planning to go for the day, which is no big deal since it’s only a little over an hour away.

What else is new? Nothing really that I can think of. I’ve been binge watching Sex and the City on Amazon Prime video. I also joined Passionflix, a Netflix type service that’s making some romance novels into movies! I watched Hollywood Dirt, Which was written by Alessandra Torre, and Afterburn Aftershock, which was written by Sylvia Day. Well, the books were written by them, not the movies. They were pretty good! I read Hollywood Dirt, and the movie was pretty true to the book. I haven’t read Sylvia Day, so I don’t know how well it translated. Anyway, the service offers one new book to movie a month, and there are some more good ones in the works! There is also a small library of some other romance movies available to watch while you wait for the new releases.

I’ve also been playing a heck of a lot of Song Pop 2. A heck of a lot.

The first few sick days I’ve had to take off were kind of nice, like a little vacation from reality, but I was still sick so it wasn’t exactly fun. But now I’m feeling the ants in my pants start to dance. Boooored. I’m probably going to take a nap so I don’t have to taste this awful taste in my mouth…

(I’ve tried soooo much to mask it, and there’s just nothing! Mints, Listerine, toothpaste, food, drink, Biotene, etc. If you have a recommendation, bring. it. on!)

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!

Hello darkness my old friend…

Let me start by saying I’m using that lyric in reference to the original song, not the remake. Mmmkay?

So yeah, it’s that part of the cycle again.

I feel cruddy. My body is sore, my throat is a little sore and tight, my head hurts, I’m tired, etc. Waa waa waa. I don’t want to read or write, so I’m just laying in my bed and occasionally listening to books on tape. I’m bored, but don’t really have enough strength or brain power to do anything productive, which sucks because there’s a lot I could be doing for school and around the house. I finally reconciled my bank account yesterday after about a week, that was fun. I hate falling behind.

I’m hungry, and so far I’ve been able to eat. I get nauseated, but that’s what the Zofran is for. I learned what I could tolerate last cycle, so we stocked up this time. I had Campbell’s chicken and dumpling soup yesterday, the kind in the plastic microwaveable bowl, and it was wonderful. Today I had oatmeal, this time the fruit and cream variety, not the plain cardboard type. It was good. Then I had macaroni and cheese for lunch – a Kraft microwaveable bowl. Not all the healthiest of selections, I know, but I’m managing with what I can. I had a sandwich yesterday with meat, veggies and avocados, so my system seems to be allowing some variety, I just don’t always have the umf to make it fresh. I can also tolerate water better this time around, more so than the Crystal Light that was my saving grace last time. It’s so weird how things flip and flop like that.

Things that are particularly annoying: sounds. Phone ringing, door bell, text tones, dog barking, etc. It’s making me quite irritable, which I’m sure is just pleasant given all my charming characteristics as of late.

Brad has been a real trooper. He’s always been super tolerant of me, but he should get an award after this, even though he’d deny deserving it. “Can you get me this?” “Never mind, not this, that.” “I realize you worked all week and weekend, but I want popsicles.” “I left my puzzle book in the other room.” “Has Daisy been outside?” “I want a popsicle, but a good flavor.” His personal assistant job description does include criteria about mind reading, FYI. And he does it all without whining about it AND giving me compliments, which I’m not so sure I’d manage if the roles were reversed. I’m tired from doing nothing, so I’m sure he’s exhausted.

So kudos to the cancer spouses, caregivers, parents, children, siblings, etc. Your job is hard, too. Really hard.

What else is new? Well, the diarrhea is back. That started around 1:00am last night and continued every couple hours throughout the night. It stopped around 11:00am, I think. Then happened once again since, but it at least seems to have slowed down. I’m taking in fluids and took Pepto, so hopefully we’re on the upside of that, though after last cycle it’s anybody’s guess. I’m doing my best to stay horizontal and not jostle anything.

I mentioned nausea…that’s been pretty persistent, and I wonder if it’s because I’m eating more and trying to be a little more active? The medicine helps, so I can’t complain, but it’s definitely more present this cycle than last.

My tastes haven’t completely become shot just yet, and I’ve been able to taste what I eat, but I do have that horrible taste in my mouth. Yuck. I need some peppermints, the red and white ones, you know? Those seem to help. (*cough*Brad*cough*) The blue and green ones are too close to mouthwash right now, and my gag reflex is ready!

Daisy has had enough of my boring self. She keeps looking at me and sighing these big huffy sighs. Like, “Come on, ma. Get up. Watch me roll on the floor. Watch me chew my foot. Watch me scratch.” She’s just not used to me being home and doesn’t know what to do with herself, or me.

Whoa is her.

But anyway, I’m on the flip side! I should be feeling pretty good by the weekend, so I’m looking forward.

Tomorrow I have labs, so we’ll see how I’m doing, and maybe if I’m feeling like garbage I’ll get some fluids while I’m there. Next Friday, the 27th, I have my six week echocardiogram to see how my heart is doing with all the poison. Then, after that, I’ll have an ultrasound of JP to see what’s happening there.

I think I’m going to crawl out of bed and get a popsicle. 🙃