Maintaining

I had another full body scan a few weeks ago. Everything looks nice, as in, very little cancer activity and shrinking brain tumors. Once again, no new activity.

So, now, I'm on a "maintenance" plan, which basically means that I'm on the same schedule I've been on since January 2014. Infusions every 3 weeks (Perjeta & Herceptin) and injections every 4 weeks (Lupron & Xgeva.)

Today, everything lined up, so I had infusion and injections on the same day. There are very few side effects with these drugs, but I do notice that I am a little more achy, a little more tired, for a few days after treatment.

Over all, I'm feeling better than I was a month or so ago. My appetite is still not great, and I don't really eat much. But maybe that's a good thing, since I have about 40 pounds of steroid weight to lose...

Start Your Engines

Pretty much all of my "days off" from work for the last year and a half have not really been "days off." I've either been getting scans, chemo, shots, infusions, surgery, radiation... The list goes on and on. The point is: My days off work lately have all been for going to one doctor or another. I've felt guilty enough taking the time I do take, and I've been hesitant about taking time for a "mental health" day (which, trust me, I've considered pretty heavily, before dragging my tired body out of bed and going in to work anyway,) much less taking a Vacation day.

It's a red-letter day. Vacation.
Sort of.

I did take a day off today. So I could go to Charlotte last night. So I could see a drag show.
Not the kind with cars, though, that would have been super fun also.

I went to see RuPaul's Drag Race Battle of the Seasons. And it was so very worth a red-letter day.

I was with some of my most favorite people, who all behaved (wonderfully) like adult-ish kids on a night out. We were *Uber* responsible and left the driving to others. We tipped well. Our lone male was sweet & kind to the flamboyant gentleman who complimented him on his "pretty face."

All-in-all, I'd say I would relive the night again. With very few changes.

Special thanks to my dear friend Wendy, who bought our tickets to the event, and to my dear friend George, who very generously hosted 4 rowdy girls for a night!

Busted.

So, guess who got sick right after New Year's *again* this year?? That's right. This girl. Again.

And I was out of work for almost another full week. I was at least a little smart, and texted my Aunt to let her know on day 1 (Saturday, 3 Jan) that I wasn't well. Basically, all the things which were "going around" in the past couple of weeks?? I got it. Sore throat, sinus congestion, every gastrointestinal issue you can think of (use your imagination, I won't elaborate...) She promptly called in a Rx for antibiotics for me. 

Mom came the next day and drove me to the pharmacy to pick it up, because I was just too wiped out to do it myself. Can you believe it??!!?? I *actually* asked for help. 

We picked up some meal-replacement shakes, since I was having trouble (still am, sadly) keeping solid food down. 

Mom took me to Panera to get some soup, while we were out. I'm happy to say, that soup was acceptable, and I managed to keep it down too. Unfortunately, since then, I've mainly subsisted on Boost, Gatorade, and amoxicillin. 

Today, I'm feeling about 85% better. I'm still fighting solid foods, but after talking to my mom last night, it might just be side effects from the antibiotic. Tomorrow is the last day for those, so we'll see how I feel on Sunday!

Brains!!

I had another brain MRI on Monday (5 January) and just got my results back!

Doc says that some spots are completely gone, and the larger ones have shrunk. We'll do another brain MRI in April, before my next follow up.

In other words, it's good news!

Christmas Daze

Christmas this year didn't feel like a hectic time for me, until it was all over. I slept all day today, which surprised me a great deal.

I went to my parents' house mid-afternoon on Christmas Eve. We have a big Christmas Eve dinner: beef tenderloin, sherry cream mushrooms, mashed potatoes, horseradish sauce, roasted veggies, and crêpes for dessert. It's always the same menu, and I look forward to it all year long. This year, though, my appetite just wasn't cooperating with me. I blame the radiation. I ate what I could, but it wasn't enough. I guess once I'm back to "normal," I'll just have to recreate this meal for myself.

Christmas Day was the usual: Breakfast at home, lunch at an aunt's house, visit Grandmama at her assisted living facility, presents, etc.

Like I said, it didn't feel hectic at the time, but now that I laid it out, it's no wonder that I went to bed when I got home yesterday and then slept off and on all day.

Luckily, it's another short week next week, so maybe I won't feel so exhausted. I've still got some fatigue from the radiation, and my appetite is just not great lately.

But I manage somehow to power through...

I'm Thankful, Really.

It's Thanksgiving/Black Friday, and that means certain family "traditions" - traditions I really look forward to. I don't really care too much about the normal Thanksgiving dinner. I look forward to the leftover turkey (smoked) transforming into turkey stew.
If you're not from the tiny town/area that I grew up in, you don't know nothing 'bout no turkey stew. And that's ok. It's weird, and I love it. The closest thing I can think of to describe it is hash from a southern barbecue spot. Mustardy, spicy, tangy, and full of turkey & potatoes.
We always make a big batch with all the leftover turkey. I think I still have some in my freezer from the last time Mom & my brother smoked a turkey. I am hanging on to it, because once it's gone, I don't know when I will get more. (Or I'll just have to make it myself...)

Another tradition I love: The Annual Black Friday Hike. I worked retail far too long to get a thrill from shopping at godawful hours of the morning, the fighting (I've seen a grown woman knock a little old man over onto a tile floor to get to a DVD player. How ridiculous!,) the bad attitudes. I am just not interested. So, my mom, sister, mom's best friend and I go hike on Black Friday. We've done several long hikes, before I got sick, but the last 2 years, we've gone to a park nearby & walked around for about 2.5 miles. It really felt good to get out and move. I've missed it, and can't wait until I feel like I can exercise on a regular basis without feeling like I'm busted for days afterward.

So far, I'd call this Thanksgiving close to perfect.

Deja Vu All Over Again....

Today marks Radiation Treatment # 13. After today, I'll just have 2 more treatments to go. Today is also the day I broke down and shaved my head again. I was hoping to hang on to most of my hair this time, but unfortunately, radiation won. My hair started falling out on Wednesday last week, and never stopped or slowed down, really. When I showered, clumps, handfuls, would fall out and cling to me. When I rested my head on something, invariably, hair would stick to pillows, headwraps, scarves, blankets. My scalp is also so tender that even resting my head on a pillow, or something "soft," hurt so much.

The one silver lining - the very sweet lady who shaved my hair this morning. She was super gentle with the clippers, she gave me a temporary mohawk just for laughs, and she rinsed my head with warm water for me when she was done. I was really upset to have to shave my head AGAIN, but she really did make it as fun/silly as she could have.

I've been working through the radiation treatments, and while many of the really annoying symptoms (dizziness, blurry vision) went away after the first few sessions, the fatigue was just beginning. I am really tired, all the time now. Even more than before, I think. I sleep when I am not at work, at appointments. If I am fortunate to complete a task, like baking a cake last week, I almost immediately need a nap. I slept most of this weekend.

Luckily, I have today off work. I *would* have tomorrow off, as well, but since we're having our Thanksgiving at work, and I am on the committee (perfect timing, right?) I *have* to be there tomorrow. I'm trying to rest as much as possible today, so that I can at least fake a decent mood tomorrow... and through the rest of the week.

Wish me luck.

This may be your Gamma's radiation

I'm normally curious, so I'll ask a million questions about the technology involved in my treatment.

This whole brain tumor(s) thing is a glaring exception. I haven't asked nearly enough questions to satisfy my own curiosity. Mainly because all of this mess has been thrown in my lap over the course of this week. What a way to really fuck up a perfectly good birthday, right? Yeah, that thought has crossed my mind. A few times.

Anyway, I started radition yesterday. So, as of right now, I've had 2/15 treatments.

Tuesday (I think. This week has been a bit jumbled/busy...) I had my "mask" made before I left from my appointment with the radiation oncologist. Perfect timing for Halloween, you say? ALMOST.
The tech really just stretched a soft, warm plastic mesh over my whole face. Really. She took a piece of plastic (comfortingly warm, very pliant) and covered my WHOLE HEAD as I lay on a CT scan stretcher. You guys, it *was* pliant for a very short period of time. Like around 20 seconds. And then, it hardened into "Jason" from the Friday the 13th movies. Except I could *almost* breathe through it without freaking out.
I really tapped into my yogic breathing & meditation for this. And I will continue to do so for the next 13 sessions. Luckily, the radiation sessions are very short, around 5 minutes. All I have to do it lie perfectly still. The "mask" helps my head stay put. My body is a different story. That is where I rely on previous attempts at meditation to help. (So far, so good. The only other contender for *I'MGOINGTOFREAKOUTNOW* level is the brain scan MRI.)
Like I said, radiation is very quick, compared to an injection. But very odd.
With chemo, I just SAT, in a recliner, for hours.
With scans (CT/MRI/PET/bone), I just have to lie perfectly still for 30-45 minutes. (Narcolepsy makes this pretty easy. I mostly take a nap.)

With the radiation, it's very fast, but it SMELLS. It smells like someone (EVIL) is waving bucket of old, dirty, bleachy water in my face. It's not a pleasant smell at all. After the first session, I had to ask the radiation tech if "it" was supposed to smell. I didn't describe the smell at all, mostly because I was bewildered.
**Please note that the techs are in a totally different room while I'm getting the actual radiation. The just put my mask on, get me lined up properly, and head out. One doesn't want to irradiate a perfectly good tech. They're apparently not easy to replace.**
The tech just giggled at me, and said, "EVERYONE asks that question!"

I took that to mean that *EVERYONE* asks, so yes, "it" does smell, and NOBODY describes the smell because it's gross. Really gross.

Radioactive... Almost...

I went to see the radiation oncology nurse & doctor today. Nurse asked me lots of questions, about my medical history, which is becoming pretty obscene at this point, and about my general health (which was pretty fantastic before cancer, but whatever...) Doctor did the same tests that my aunt and my oncologist did to test my balance, see if I favored a side of my body, etc.
Both Nurse & Doctor were great.

I'm now scheduled for 15 sessions of whole brain radiation, then we'll test again & see how I look. By that, I mean I'll have another MRI & see if my brain looks like it should look. Fingers crossed. Again.

So, of course that means that I'm having dreams about being a drooling, mouth-breathing fool after "they" irradiate my brain. 15 times.

I'm told there are very few side effects. I'm also warned that I'll probably lose my hair again. Although the doctor said, "You'll lose your hair." And the nurse said, "You know, that depends on each individual patient. Some lose all their hair. Some just thin out. Some lose patches."
So there's that. Maybe I'll use this as an excuse to dye it some funky colors? Or probably, I'll just shave it again and suck it up.

Of course, my hair is *just* long enough to start really curling up. It's about 3 inches long now. Seems a damn shave to have to lose it again...

So, I'll leave you with my new motto:
Better than the alternative.

Early Birthday Presents

No, not really.

For a few weeks, I've had some balance issues and some vision problems. My vision problems, we explained away with the excuses that I had not seen my eye doctor in over a year. The balance issues were so infrequent that I never remembered to mention it to anyone.

Then, we noticed that one eye was a little "droopy," especially when I got tired. So, M went with me to my last infusion, which was 10/17. And she made sure to mention my "droopy" eye. Sharon, my infusion nurse, promptly called my aunt, and we went across the hall to see her. She and my doctor did a couple of little tests to see if my body favored either side, which it did not. It turns out that the right side of my face is paralyzed, and is "textbook" Bell's Palsy. My doctor even said, "Yep. Textbook."

They sent me off to have an MRI of my head, just to be sure and to "rule out" other factors.

Except, it didn't rule out anything. The MRI shows a couple of small tumors, which means my alien invaders aren't quite ready to give up the ghost yet...

Hello-ello-ello-ello??

I had another echo-cardiogram today. I get one every two-three months. I have another one scheduled for November.

Apparently, one of my infusion drugs has a tendency to cause heart problems. My drugs, so far, are working so well, I am always afraid that my echo will come back bad. Like, bad enough that I have to stop infusion. Frankly, I'm willing to do infusion every three weeks until forever. I don't care that it makes me achy and really tired for a few days. I'll be happy for the ache, for the tired few days every three weeks, as long as my cancer stays in check.

That's all I've got for now. I'm just feeling a bit pensive, and I'll probably be nervous until I call my aunt in a few days to check the results of the echo...

Fingers crossed that the news stays status quo.

Scans.. Again...

I had scans again on Wednesday. CT & bone scan. CT scans are super fast, like less than 10 minutes, but required fasting all morning until my appointment at 1pm.  I managed to sneak breakfast in, mainly because I'm a horrible person if I don't get breakfast EVERY morning. It's a rare thing for me to skip breakfast in general, but I've found that if I do, I'm a bottomless pit for the rest of the day, and my attitude leaves much to be desired. Since I'm at work by 8am, I figured a solid 5 hour fast would have to be enough. Thankfully, it was. Also, thankfully, I was able to grab a salad from the cafeteria at the hospital after my CT scan, because the bone scan works on a radioactive tracer, and I didn't have to continue fasting.

Today, I went to the oncologist for my follow-up. As usual, I was nervous, and had been nervous since Wednesday. I normally just see my Aunt (the NP for my oncologist) when I go to Dr. Madden's office. This time, I got to see my aunt & my doc!! And it was great news!!

My bone scan showed "subtle, decreasing activity," mainly around my pelvis, where I had a biopsy last year during all the preliminary stuff before chemo. The report stressed the "subtle" part, which is fantastic news.
The CT scan confirmed the "subtle" activity in my pelvis. No mention of the (former?) tumor in my breast.

Needless to say, my aunt, Dr. Madden, and I are thrilled.

Just FYI: As with any metastatic cancer, there is no "remission." But this is the best news I can hope for! And I'm grateful for it.

Happy Labor Day!

It's Labor Day today. I have a "big girl" job, so that means my company pays me to stay home today. It's a rather unusual thing... to have the day off and to be paid for it.
For the past few months, since I ran out of the leave time that I'd had saved up, any days I was not at work, I just didn't get paid for those. FMLA helps me keep my job, since companies don't really like it if you don't work and don't have leave time to compensate.

My boss has been fantastic! He helped me get forms together when I started this mess. He helped me navigate through FMLA forms and requests for emergency leave from my company. Not that any other boss wouldn't have tried to help, but he had some health issues a few years back, including a kidney transplant, so he was very familiar with the particular red tape that comes with a significant health crisis. The first few weeks certainly felt, in my mind, like a crisis. It's starting to feel a lot more manageable now.

Being finished with chemo helped. I'm not as sick all the time. I'm slowing getting my energy back. I'm still not 100% yet, but I'm able to go to work almost every day, excluding infusions every 3 weeks, and half-days when I get injections every 4 weeks. I have scans less frequently, so I'm off for parts of those days too.

I still feel guilty when I'm off work. I know I'm not taking advantage in any way, but I feel guilty not being there. Like I'm leaving my coworkers to pick up my slack. My coworkers have been amazing, though. I'm really lucky to be part of the team that I work with. I mentioned my guilt to one of my coworkers, and she said, "Don't feel guilty. It's not something you can control. We don't expect you to control it. Just take the time you need. Work isn't going anywhere." My boss said almost the same thing, "You don't need to feel guilty. You're here when you can be. You do your job. Relax."

So that's what I'm doing today. I'm relaxing. I'm watching movies on HBO & Netflix. I'm updating this blog. I'm actively NOT feeling guilty for things I can't control. Another lesson learned (or in progress,) courtesy of cancer.

Happy Anniversary, Cancer.

Today is the 1 year anniversary of my cancer diagnosis. It feels like it's been longer than a year, but whatever. I'm still here. I'm still going through treatment. I'm lucky enough not to require surgery (yet.)

My hair is growing back. The "new" natural color is very, very gray. I'd like to say "ash blonde," but who are we kidding? It's gray. And I've got a lovely white streak right in the front. For now, I'm keeping it. I was a "redhead" for years, and I just can't bring myself to switch back to that until I'm out of the Little Orphan Annie stage. It's just asking for trouble. So far, I've got about 2.5"-3", and it's still curly, so I've got a bit of a wait. I'll just have white girl 'fro for now. At least it's *my* hair. It's still way too hot to worry with wigs right now. SC summer heat + humidity + hot flashes don't mix well with wigs. I'll probably play with my wigs more when it gets cooler. In the meantime, I'm waiting to try some interesting hair colors. I won't get this chance again, hopefully.

I'm still carrying around about 30 extra pounds from chemo/steroids/eating like a toddler for 4 months. It's frustrating. I can't run. I can't do a full push up. I can't walk more than 2 miles without craving a nap.

I'm calling my fatigue the "new normal" for me. For now.
I'm trying to embrace my hair. For now.
I'm just trying to be thankful.

Just Go. And LIVE!

I've been anxiously waiting for today for months. I've been dreading it since I first got my diagnosis. The stress of just waiting for it has been intense, and since I'm pretty stoic and don't like to emote or "share" my feelings, I've just been keeping all my anxiety to myself.

Today was mammogram & surgical consult day, ie: the day I find out how much of my breast I get to keep... I was a wreck all day. But I went to work & went to my appointments like everything was normal. I got both boobs smooshed & went for my follow-up with the surgeon.

My surgeon is a lovely woman, and she's always super sunny. Today was no different, and ordinarily, her disposition would just irritate me, but on her, it's just what I need. She came in to the room, where I'm wearing a too-small smock (with the closure in the front) and proceeded to feel me up and ultrasound my previously smooshed breast. And then she said, "There's not really anything we can take out, so we'll see you in 6 months!!"

Of course, I made her stay & talk it all out for another 15 minutes... We could go in & take some tissue from where the biopsy marker is & test it, but then I'd have to recover, which might set more of my treatment back, & she just  doesn't see the point since there's nothing she can definitively *see* to remove. So, my boob is off the hook for another 6 months.

My reaction, the first one, was to cry... Mostly because I'm just overwhelmed. Right now, an hour and some change later, I'm just a bit numb.

I told my doctor that I feel like I'm just waiting for the proverbial "other shoe" and without skipping a beat, she said, "There is no 'other shoe,' honey. Just go. And LIVE."

Never have I heard more wonderful words!