Cancer update!

Still have cancer! Got a recent scan, results are stable-ish. Stable enough that there is no need to panic at this point. The cancer is just doing what it does, so we adjust the pills as needed, and re-scan in a couple of months to see what's happening in there.

Really, at this point, MRIs are almost boring. I fall asleep in there every single time, so if nothing else, I know I can squeeze in a nap for the day.

So, the good news is that today, I actually AM more than my diagnosis. The cancer is not the most important or exciting thing about me. I have my writing, my awesome cancer friends (I never expected to be able to say that!), and somehow, even with stupid coronapocalypse quarantine, I'm managing to stay reasonably busy considering I almost never leave the house besides treatments and bloodwork.

Is that it? I think that's it.

Reminder, kids, cancer still sucks!

Original poem, and a commentary on quarantine

discarded mask

disgusted by the disposable nature of safety

one year ago I would not have needed the muzzle

keeping me in

keeping you out

stifled by hot breath

disgusted by myself

why is it I have to burp every time I put on the mask?

disappointed in protesters who disrespect my condition for their "constitutional rights"

Freedom to kill me

dissolves my Freedom to be

I long for before

1 impatiently wait for after

unable to mask my disgust at the unmasked-

so afraid of every cough, every sneeze.

- 21 May 2020

I wrote this for my writing group a few weeks ago, and I want to talk about this coronapocalypse. Now, I know that people are stir crazy, fighting cabin fever, and trying to figure out how not to dropkick their kids out the window.

The thing is I've been essentially on lock-down, self-quarantining since flu season started. I go out every once in a while with The Husband, with my reusable washable mask, and tons of hand sanitizer. Our trips out are quick and purpose-driven, and involve very little in the way of meandering. Since I've been essentially in isolation since December (I think?), I've become very uncomfortable being in public. People cough, sneeze, and breathe on all kinds of things that I don't even want to think about. So essentially I stay in my house.

On top of all of that, I just recently started anOTHER new chemo protocol. Plus my wonderful oncology team has so kindly added even more pills to take every day.

I've got uppers, downers, anti-inflammatory pills, antacids, the whole lot. This new treatment protocol is HARD. Not to get into too much whiny detail, but sometimes it feels like drowning under the weight of it all. I've been trying to keep up with people as much as I have the time and energy to do so, but y'all, I am tired. There is nothing interesting happening, and because I am even more immunocompromised than before, I really just don't trust going out in the public. If one flu virus or strep germ gets to me, it could be incredibly dangerous.

So, that being said, I know that I've been pretty radio silent for a while. I know there is a whole apocalypse happening out there in the world. My silence doesn't mean I don't notice what is happening out there. My silence means that I have my actual literal brain as my top priority right now. That is all I can focus on at the moment, and you know what, I have actual literal brain cancer. I think this focus is fair.

Let's talk tea!

I used to hate tea. I thought it tasted like nothing more than dirt water. There was a time where I would rather die of thirst than drink nasty old tea. It was gross!

I was a coffee girl. I like my coffee like I like my men: strong and sweet! Cappuccino, macchiato, hot, cold, frappe, latte, any and all of the above.

Seriously, look at this sexy beast!

The thing about coffee is that these days my stomach can only handle one at a time. Since The Husband is at work, it is hardly worth it to make a pot of which I will only drink one. Also, I'm lazy.

Keurig and those types of systems are not for me. They are wasteful (all those pods) and they are not worth the price per cup. Also, the coffee just isn't very good. Yes, I am a coffee snob. I like Starbucks*. I think Dunkin burns their beans; their coffee is bitter in an unpleasant way. QT is good (and affordable)**.

Anyway. I digress.

So. Tea. Dirt water.

A few weeks ago, whatever week it was that we had winter for like four days here in South Carolina before summer came back with 60-70 degree weather, I decided that I was going to find a tea and I was going to like it.

The Husband (look at that face up there 😍) indulged my nonsense, and we went to the grocery store to buy a couple of boxes of tea. Keep in mind, we bought two boxes of tea even though I didn't (at that time) like tea.

Well, evidently, I made some good choices for once. It took a little trial and error, and the advice of a friend and feedback from a sister to refine my tea-making skills, but I am happy to report that I have somehow, in less (fewer?) than a couple of weeks, learned to love tea!

And this AWESOME mug was a gift from The Husband!

Turns out vanilla chai is delicious, and inspiring. Some of my best writing lately has been on vanilla chai.

Chamomile is amazing. Having something warm to drink before bed helps get me into the right cozy sleepy mood.

* This should be read as: I like to sit and just hang out at Starbucks while drinking their decent coffee.
** But not the best place to hang out...

Dying fast vs. dying slow

Presumably, most of the people reading this are dying slow, in the sense that this is the way time passes: it is a reality of life.

There are some readers who think that I am dying fast, in the sense that they think I am actively in the process of wasting away in a sickly and frail bag of skin and bones.

I am not dying fast.

Yet.

Of course, at some point and for everyone, that changes, but I want people to know that for the time being, I am just like most of you. I am dying slow.

Because I'm still in the position that I am dying slow, life is actually pretty ordinary. I take my morning medications, I write, I eat breakfast, I play with my goofy dog and have extensive conversations with my cats.

I nap. I eat lunch. I write or read for a while. I hang out with The Husband when he gets home from work.

We have a remarkably ordinary routine going. Often, I miss the extraordinary that we were able to experience, but for now, uneventful is objectively a good thing.

I know that with a diagnosis like mine, my family and friends worry that I am dying fast.

Here is my Christmas gift for you: For the time being, you don't have to worry so much!

Cancer Update: Scan results and Boundaries

Well, today we are taking a break from When Things Fall Apart, but don't worry, there are still a few posts ready to finish analyzing this book.

In the meantime, here's an update.

I had my brains scanned a week or so ago, right? I got the results just a couple of days later, but I needed some time to process the information before I put it out there. As a reminder, I am very open about the horrors of this diagnosis most of the time, but that does not mean that I am obligated to share with you every medical detail of my life.

Anyway, there is good news: There no significant change to the size of my teeny-tiny tumor, so my doctor wants to stick with the current plan and re-check my brains in a few months. Right now, they are not worried about me, and from what I can tell, the lack of urgency on their part means that there is nothing to worry about doing.

I am doing maintenance chemo, and I am going to continue that for at least the next six months, I think, unless something significant changes in the scans of my brains. That part, I am not looking forward to. Chemo SUCKS,  and even though they say that oral chemo is supposed to be more easily tolerated than IV chemo, it still SUCKS.

For a little while, I was feeling really good, and now, I'm not. It happens. Nothing out of the ordinary for a patient with my diagnosis to feel good, then feel bad, then feel good again, and so forth and so on and what have you. It's a cycle.

Remember that bus that could hit me tomorrow? I feel like it just revved its engine to remind me that it's there, but luckily, for now, it's not going anywhere.

I am still frustrated by many parts of my diagnosis. I feel like there is so much waiting involved, and I am not a naturally patient person. Right now, I am at the point in the cycle where I am cranky, and tired, and generally grumpy. I know that I will feel better, because it is a cycle of ups and downs, but right now, I just want off this ride.

Cancer update: Things that have been happening.

I've spent so much time thinking about other things that I realized that I haven't really had any cancer updates lately. So here it goes.

I am at the boring stage of cancer. Of course, there's the vomiting, the dehydration, the fatigue. There's the feeling like I have ADHD because my attention span has significantly decreased. There's the multiple naps I take every day because the body is working hard to repair all I've been through. There's the change in medications and the change in appetite.

None of this particularly interesting to me. I'm sure there are some who might worry that I am wasting away on my deathbed, but the majority of the time, I am just napping on the couch.

I'm still not driving because my eyesight still hasn't returned to normal (which Rockstar Neurosurgeon said could take several months). I'm in my house almost all day unless someone wants to come pick me up to go somewhere while The Husband is at work. Honestly, though, since it is finally starting to get chilly, I am perfectly content cocooning up in a blanket in my house.

So, during the day, I write, or nap. Play with the dog. Read from my book. The Husband comes home from work and we figure out the dinner situation. We empty the trash and wash the dishes.

Remember back when I said that cancer was boring?

It still is.

The Good News, The Bad News, and the Frustrating News

Who is ready to hear the news?

The good news is that there is no new bad news.

The bad news is that there is no new good news.

For now, I need to get into clinical trials, and wait for my follow up in a couple of weeks.

So. Back to waiting.

Still waiting - don't freak out

Okay, so last Friday, I got my post-treatment scan.

This week has been a never-ending hell of waiting, waiting, and waiting some more. Just endlessly waiting.

Tomorrow, I find out something resembling answers, hopefully. Let's talk about this.

On Diagnosis Day, The Husband and I found out a truly overwhelming amount of life-changing information. We spent hours meeting the oncology team, planning appointments, crying, learning about medications and side effects, signing paperwork, crying, learning our way around the cancer institute, and crying some more.

And then.

Radio silence.

We needed time to process everything that was happening and everything that was going to happen. People sent text messages, called, emailed, send FB messages. I ignored all of them for the better part of a week because I was busy crying and being mad at the world and my own body.

Eventually, we emerged from our hole to start telling people the news. From the beginning, it was so hard, and it kept on becoming more difficult with each person we had to tell, which led me to start this blog.

So, I need to remind you that I have boundaries and what that means is that although I have made every effort to be open about this entire terrible process, that does not mean that anyone has the right to my medical information. Tomorrow we find out... something. We will process that information as we do. Once we are ready, that information might be disseminated via the blog, phone calls, FB, or not at all. Right now, we just don't know.

I know that waiting to hear from us is hard, but just try to imagine how hard it has been for us!

The little things add up to the ugly side.

I thought that finishing chemo and radiation meant that the hard part was over.

I was wrong.

Since finishing, I've had more time on my hands than I care to think about. Being idle is bad, but being unmotivated is worse. The fatigue hit me pretty hard, too, so all in all it has been a rough couple of weeks.

I'm not technically allowed to drink on the medication that I am on. I wish I could.

Nobody ever said that cancer was supposed to be fun, but this waiting period, where I don't know what exactly I'm waiting for, is especially unbearable. I don't even know what phase 2 of treatment looks like. I might find out next week. Or I might not.

My head itches. The last week of radiation left visible burns on my head. While I would hardly argue that I'm the queen of vanity, I will say that catching people staring at my head makes me feel weird in a way I never expected. The skin started peeling off of the burn, so that is a little extra itchy and unpleasant.

Small things are leading to panic attacks that I thought I had under control. I was wrong.

The body is a fickle thing. I am out of shape and still in recovery from some pretty traumatic stuff, right? Yet walking outside in the heat leads to me getting shortness of breath, which then scares me, which leads to panic attacks.

I'm thirsty like I've never had water before in my life. I still mostly just want things that are cold. But I also get cold easily, so all I want is to be cocooned in a blanket all day with a super ice-cold drink by my side.

I don't want to leave my house.

My hair is still falling out.

I'm in a constant bad mood.

The Husband is doing the best he can with me, but I will be the first to admit that I've not been an easy patient lately. I just don't want to do anything, decide anything, think anything. And I'm tired of listening to myself complain.

I didn't expect this part to be so hard.

Unexpected side effects of ending chemo and radiation

It has been five days since I finished chemo and radiation. Some unexpected and not quite pleasant side effects of finishing this poison:

• I slept 20 out of 24 hours for the first three days, and only slightly less than that in subsequent days.
• My appetite is basically non-existent. I eat because I have to, but mostly, I'm forcing myself to eat and being mad about it. Food sucks.
• I am thirsty like I've never had water before in my life. Yesterday I drank easily four or five liters of water or juice, and my thirst is never quenched. The Husband says my body is trying to flush out those poisons I've been ingesting for the past 6 weeks. 
• Also, I only want things that are cold. Tons of ice in my drink, cold foods, smoothies, etc. If you know me, you know that it's weird that I want ice because I almost never want that much ice. Lately, it's been so bad that I've been eating ice. Rather, letting it melt in my mouth. 
• I am cranky in a way that I didn't expect after finishing treatment. I thought I would be happy. I thought I would feel accomplished. I thought I would feel some kind of something good. Instead, I feel annoyed because this f*cking diagnosis is hanging over my head while I wait to find out if the treatment worked. The thing is, I still have two and a half weeks of waiting, and I don't feel good about that right now.
• My hair is continuing to fall out on both sides of my head. Not that I'm looking for a wig to fix this mess, but those little hairs are itchy!
• The last week of radiation was the "power-up" period, where they focused the beam (?) more tightly on one spot on my head. What that means is that I have visible burning on the skin on that side of my head, to the point that it caused blisters. The healing process is itchy, and my headskin looks weird.
• I probably mentioned this before, but I am so tired. There is nothing that I want to do or see or eat. I basically just want to sleep forever. I know that is not necessarily the best, but for now, that's where I'm at.

And just like that, my energy is gone. Time for yet another nap?

Sometimes cancer is REALLY boring

I've got such great friends and family who ask after me, looking for updates and wondering how I'm doing, and sometimes it is really hard to answer because cancer is really boring.

I sleep a lot. I take my chemo every day. I have to make myself eat most days because chemo burps are terrible for the appetite. Every afternoon The Husband drives me to radiation. We try to figure out what to do for dinner (difficult because of aforementioned chemo burps). That's basically kind of it.

I am trying to add some structure to my life. Hopefully, soon, some people will be reading with me. I have the book and am hoping to start it this weekend?  

I tell people that my condition is currently boring, and I don't think they understand. Yes, I have chemo every day. Because the cancer is in my brain, it's not chemo like most people imagine. I'm not hooked up to an IV infusion. I don't have a port. My chemo takes almost no time out of my day because it is one (very nasty) pill. Seriously, I take a pill every day. That's my chemo. That's literally it.

Some days, the chemo makes me feel nauseated, but mostly it makes me burp and tastes really bad.

I know, not the most lady-like, but what can I say? That really is the most exciting part about the chemo. It's not even making my hair fall out. That's what the radiation is for.

Five days a week, I have a crazy-looking machine aimed at my head for 15 minutes. I don't see a laser, I don't glow in the dark, and I haven't gotten any superpowers. I don't feel it, but the machine is a little noisy. It makes a weird hum/whine that just doesn't sound right, but at this point, I'm mostly used to it. The most exciting part is that, since I can listen to music while I'm in there, I make a different playlist every day, depending on my mood.

That's it. It takes more time to drive to radiation than to be in radiation.

I know that sometimes people get concerned because I haven't updated lately, but seriously, there just isn't much to update. I sleep mostly. I eat. I get my treatment. I don't get quite enough exercise. I sleep some more.

Pretty boring, right?

Sometimes cancer is boring

Yeah, I have brain cancer.

Since I ended up in the hospital with a post-op infection just 2 days into my chemo/radiation, a lot has happened.

I needed a surgical procedure to clean out the infection. That meant another almost week in the hospital. We found out that I'm allergic to TWO different antibiotics.

I got sent home with a PICC line so that The Husband could give me my IV antibiotics at home. I was still having an allergic reaction to the oral antibiotic I was also taking. Essentially, I was a miserable mess, and honestly, I couldn't bring myself to do anything beyond take benadryl for the itching and sleep the rest of the days away.

I ended up back in the hospital (for the THIRD time) because my hand swelled up so much that it looked like I was wearing a boxing glove. They were worried I had a blood clot in my arm as a result of the PICC line. It was not a clot, but there was enough inflammation and swelling that they decided it was safer to remove the PICC line and just keep me in the hospital to administer the rest of the course of IV antibiotics.

Keep in mind, I found out my diagnosis on June 27. It has been just over a month. That is not a lot of time. I barely had time to start my chemo/radiation before the complications started piling up.

From the beginning, I wanted to be sure that I was still ME. That I was more than just that Cancer Lady. That I was More than my Diagnosis.

The truly frustrating part has been that I haven't even had the time to be more than my diagnosis, because these complications have stacked up so quickly. I've barely socialized. I haven't read a single book since this started. I haven't done anything besides be in and out of the hospital.

Do you know how boring it is to be in the hospital?

Please don't get me wrong: I do NOT want to have an exciting hospital stay, because I imagine excitement means that something went wrong. Nonetheless, when the single only reason I'm here is for IV antibiotics, there's not a whole lot else to do.

I still get tired easily, but that's the nature of recovering from brain surgery (twice). Since I can't really start treatment for the actual cancer, there is not much else to do besides wait for the antibiotics.

The weird part is that, overall, I feel pretty okay. The occasional headache, but that's to be expected when people have been all up in my brains. I don't feel like I have cancer. I don't feel like I have an infection. I don't feel like I have anything. It's disconcerting being in a hospital when you don't feel particularly sick. So, since all I seem to do is wait, that's all I'm doing for now.

Just you wait.

By the Numbers

Here are some numbers about my life right now:

3: Hospital stays

2: Different hospitals 

17: Days in the hospital

2: Brain surgeries

1: Gross brain tumor

1: Infection in and around my brains

2: Allergic reactions to antibiotics

1: layer of skin scratched off from the allergic reactions

1: Suspected clot in my arm

0: Actual clots in my arm

1: Phlebitis in my arm

?: Number of crappy hospital meals

7: Visitors in the hospital (not all at once, of course)

4: Times per night that I get woken up by night shift

6?: Prescription medications I take every day

2?: Weeks until I restart chemo/radiation

2: More doses of IV antibiotics

1: Day until I get released from this hospital!


Okay, that's the best I've got for now. More later!