Deja Vu

The past few months have lulled me into a false sense of security. I was finally starting to feel "better" and closer to "normal." I was juggling infusions/injections/doctor visits/scans/work pretty well, going to work early to try to mitigate all the time off I needed for treatments, working overtime when it was available.

Then today happened. It was not a good day. Just like last year, around this time, I had a brain MRI. It was unexpectedly not what we hoped for. So, at my follow up visit to the radiation oncologist, I had another mask made in preparation for 10 rounds of radiation, starting Monday. Once again, I'll be sick for the holidays.
What is this bullshit?
I think my body is conspiring against me to forever ruin the holidays. I was just getting out of the "retail funk," having worked too many Black Fridays, Christmas seasons. It was just starting to be fun again.

Y'all, say some prayers, send some good vibes my way, keep me in your thoughts, whatever it is that everyone does. It's going to be another go-round...

Happy Birthday to ME!

I made it to my 39th birthday.

I ate German food on Friday, which is what I ask for pretty much every birthday now.
A friend of mine made dinner (pasta carbonara.)
Another friend made a "Granny Cake" for me (yellow cake, layered with chocolate frosting.)
Some other friends met me out for karaoke & followed us to another bar for some games of pool.
And I ended up having a great time... So great, that I am totally paying for it today.

And I am totally ok with that.

Jimmy Carter does NOT have brain cancer!

I just saw this article on slate.com that says Jimmy Carter had brain cancer. This is untrue, misleading, and shows just how much people don't know about cancer.
Jimmy Carter has melanoma. It did not start in his brain. It metastasized to his brain. It metastasized to his liver, as well, but no one has freaked out that he has liver cancer.

Not to say that it's any better to have mets in one's brain, but it isn't the same thing as having actual brain cancer. 

<end soapbox>

Happy 2nd Anniversary, Cancer!

I wish I could say that year 2 was uneventful & healing. Unfortunately, I just don't have that kind of luck.

I started feeling weird around August 2014: blurry vision, balance issues, neuropathy in my hands and feet. I just thought it was remaining symptoms from chemo, which ended just before the new year.
Then, I got Bell's Palsy, where half of my face was paralyzed. My aunt immediately ordered a brain scan for later that day, thinking that we would just "rule out" brain tumors, and she gave me a Rx for steroids to treat the Bell's Palsy.

The next day, she called me with the results, that we were hoping to rule out. I got an appointment with the radiation oncologist within a week. I had 15 rounds of whole brain radiation, which sucked like you could not possibly imagine.
I didn't really write a lot about the experience, mostly because I was stressed out, exhausted, and didn't really know how to put into words all the things I was feeling. I started the radiation treatments on 10/23, 2 days before my birthday. I finished just before Thanksgiving. I never want to have radiation again. It took me months to recover, I worked the whole time. I didn't have leave to take time off to rest, so I just pushed through the whole thing. I spent most of my time at home sleeping. I didn't do any of the fun holiday things I wanted to do, like bake cookies, crochet ornaments, make crafty things to give as gifts to my friends & family.

So here I am, starting Year 3, hoping for the best. Hoping to bank some actual vacation time so that I can take an actual vacation without worrying about taking unpaid leave. Hoping, in the meantime, that I can find some relaxing "long" weekends to go visit friends and family who are out of state.

Hoping that all my scans and tests come back at least status quo.

Radioactive Day

I'm radioactive again today, because it was time for another bone scan. I also had a CT scan. It was pretty much an all day process. I had to drink my first barium breakfast shake at 7:30, in preparation for my CT scan at 9. I showered,  dressed, and went to the hospital. CT scans are only 5-10 minutes long, but between getting my port accessed, getting injected with radioactive isotope for my bone scan,  drinking barium breakfast #2, and getting my port de-accessed, I spent 2.5 hours in the nuclear medicine department. Less than an hour later, I was back for the bone scan. I had just enough time to get a Coke & a pack of crackers, before I had to make my way back to Nuclear Medicine for my bone scan.

By that time, I was sleepy, mainly because I had no proper breakfast, a miserly lunch, & unmedicated narcolepsy. I couldn't take my normal regiment of eleventy pills as usual, because no breakfast.

Y'all, I woke myself up snoring on the table during my bone scan. Several times.
Then I went home, and napped there for an hour. I could probably do another hour nap now, without a problem.

Now, I wait for results of my scans.

Until next time...

Busy, Busy Bee

It's finally springtime, and I am starting to get my energy back in a very noticeable way. This is a good thing, for obvious reasons, but also good because I've been doing a tiny bit of traveling.

Last month, I went to Charlotte with MJ & W to see RuPaul's Drag Race Battle of the Seasons. We spent the night with my dear friend, G, and he was a most gracious host. I have to admit, I was thoroughly exhausted when we got home from this trip, even though it was only overnight. The rest of the week at work was a struggle, but I made it through.
Last week, I went to Atlanta for a concert, with MJ and our new friend L. We stayed overnight with W & her boyfriend. My sister met us for dinner at Porter Beer Bar before the concert. I ordered way too much food, considering my flaky appetite lately. I barely ate 5 bites. It was delicious, and I wanted to eat more, but I'm at the mercy of an arbitrary level of nausea. Some days are pretty decent. Other days, I barely eat a full meal all day.

I wish I could say that my rising energy level and waning appetite has resulted in some significant weight loss, but sadly, I'm holding steady. Ten pounds is better than nothing, considering I've really not put any effort in.

I keep telling myself that I am going to go for a walk, or do a little yoga, or ... but these things have yet to happen. Maybe tomorrow?

The Big C

I'm watching part 1 of the PBS cancer documentary tonight. I'm only 30 minutes in, and it's been a hard 30 minutes to watch.
I'm not normally one to leak from my eyeballs, but just in case, I'm watching this alone.

This is all I have tonight.

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.