This Brain on Monday

I feel like this brain is dying. For a few months now, I just cant find the words I want to say. Reading online it sounds like chemo brain but this sounds much worse. I’m also on Gabepentin and it says it can also make you a little dumber. I just don’t know anymore.

Time To Celebrate

Technically, it’s my birthday. Not that you’d be able to tell around my house since I’ve been vetoed on everything I’ve wanted to do today. Yeah, I’m a little bitter.

Anyway, with everything going on, I am still very thankful because it’s not JUST my birthday. Today marks one year of treatment for my recurrence of cancer. More importantly, it marks a whole year of survival and for that I’m grateful. Even better, is that it marks a year of survival with zero cancer progression.

Yeah, I’m getting older, and used to, it might have bummed me out. Now I’m just thankful for the opportunity.

Appearances

Once I switched to a standard chemo regimen, I started looking for an oncologist close to home. I still go down to MDACC once a month but I wanted to do the weekly infusion here at home. After dealing with a lot of egos, I finally found someone who was willing to work with my oncologist from MDACC.

The big day finally came and I had my first appointment. As with most doctors these days, I had to arrive 20 minutes early to fill out all of the paperwork. I took my husband with me and I guess we were dressed pretty casual.

On our best days, me and my husband dress pretty relaxed. It’s mostly t-shirts, shorts, and capris because it’s hot as hell in Texas and above all else, we like to be comfortable. We’ve never much cared for appearances but as we get older, I find that we’re judged on it more now than when we were younger.

We get shitty service in restaurants because wait staff seem to assume that people coming in dressed like us must be too poor to afford food and a nice tip. If only these people knew that we generally tip 25-30% they’d be all over us but that’s rarely the case. Anyway, at this doctor’s office, the judgement came in the form of a ‘forgotten’ financial assistance form that was allegedly supposed to be in their welcome packet. They just had to run out and give it to me before I left the building at the end of my appointment.

Me and my husband shared a chuckle over it because we like things to be that way. I don’t want people to be able to look at anything I own and come close to guessing how much we’re worth. We bought a house $100k less than what we can afford. I drive a car that many would consider slumming for what we can afford. I budget like crazy, down to the point of budgeting in an allowance so that even my frivolous bipolar spending is controlled.

I have a friend who thinks that living on a budget and figuring in an allowance is pitiful and demeaning. I think they get themselves into situations that many Americans struggle in these days. Buying houses and luxury items they can’t afford and only thinking about saving money when they decide to save up to buy the next big item.

When I was young, I would have bristled if someone thought I was poor (even though I was).This aging thing does have its benefits, it’s nice to no longer care about appearances.It’s even nicer to still be able to afford all the luxuries I couldn’t when I was first starting out.

 

 

 

Release The Harpy!!

I often read /r/cancer over on Reddit. A couple weeks ago someone started a post asking if people had changed since they had been diagnosed. People shared a lot of stories. Some people had changed for the better, some people had changed for the worst but I really only had positive things to say about how cancer had changed me.

Overall, cancer has made me a more patient, outgoing person. Or at least that’s what I used to be able to say. For the past couple of weeks I’ve become an unbearable bitch. I’m grumpy all the time. I have no patience for anyone or anything. My husband is afraid to let me drive because my road rage is a very scary thing to behold.

I often say just incredibly rude stuff to my husband with very little provocation. It’s like I’m channeling a shittier version of myself circa 1998. My in-laws talked their way into coming down for my birthday later this week and I’m dreading it. It’s like I’ve lost my filter. Rude stuff pops out of my mouth before I realize it was even a thought. I can only imagine the nightmare this week is about to become.

I’ve tried to take a step back and look at how I’m behaving but I don’t know how to stop this wave of nastiness. I almost don’t even feel like myself.

Taxol

I thought I had posted about Taxol before but I guess I haven’t. This is the 4th chemo treatment I’ve tried since I started in October of last year. I have been on it for 4 rounds so far and I’m relatively miserable. It’s nothing compared to the Adriamycin, Cytoxan, and Taxotere cocktail I was on back in 2010 but it still sucks. I get a Taxol infusion every week for 3 weeks and then I have a week off.

I have some of the usual side effects. My digestion is off, everything I eat seems to give me an upset stomach. I think that’s just how the nausea is presenting itself. Although, gummy bears are a sure bet for me. It’s about the only thing I can eat without my stomach starting to feel gross. The fatigue has been pretty bad. I am sleeping about 14-15 hours a day right now. I had to cut my fingernails short because they started to ridge and I don’t want to deal with them peeling off like I did with Taxotere.

I have had some joint pain but it’s mostly just been in my hands.  I woke up this past Friday with shooting pains through my muscles and other joints. I found some anecdotal evidence that the Taxol could be doing it but nothing definitive. I see my oncologist tomorrow so I plan to ask her about it. I’m also having weird headaches which consist of just shooting pains so I’ll ask her about that as well.

I haven’t had any neuropathy yet but it’s definitely a concern. I have heard of people doing their Taxol infusion with their hands and feet in ice water so the blood vessels are too constricted for the drug to saturate them. Supposedly it heads off the neuropathy but it also sounds horribly uncomfortable. I’m kind of terrified of neuropathy in my hands so I think I’m going to try the infusion tomorrow with my fingers in ice water anyway. I’ll let you know if it works.

 

Social Media – A Bit Ranty

I get social media. I think it’s cool that it widens the audience for your life if you want that kind of thing. I also kind of hate it. I’ve never been the type to want to share the minutiae of my life with lots of people I barely know so maybe that’s why I don’t like it all that much.

The main thing I don’t like about it is how it affects the relationships of those who claim to be friends and aren’t just mere acquaintances or people I went to grade school with 30 years ago. When it comes down to it, I don’t like social media to be the main way I communicate with friends but that seems to be the rule these days.

I don’t want to watch a YouTube channel, read a blog, follow someone on Twitter, or religiously pay attention to the shit they post on Facebook just to find out what’s going on with them. We’re still people who can converse one on one, aren’t we?. If they don’t have time for that, that’s cool, but when they do finally get around to having a conversation with me, there shouldn’t be surprise that I haven’t been following their constant social media updates. I’m a little old fashioned like that.

If it’s important enough for me to know it, then it’s important enough to have a conversation about it. I almost feel like social media has made a lot of people a little anti-social. When it comes to broadcasting their life, it’s okay but when it comes down to interacting with someone personally, skills often seem to be lacking.

TL;DR Interact WITH me, not AT me

I’m okay

How are you doing? It’s that standard conversation starter. It just feels like a loaded question with cancer on the table. I don’t even know what to say to people anymore. I’m guessing they just want to show that they care but I’m kind of tired of answering the question. I try to get by with, “Oh, as well as can be expected.”, but that’s not enough for some people. They push, they prod, they pry, until they wring every last symptom and side effect out of me. They want to hear all the gritty details because people seem to have a macabre fascination with other people’s suffering.

Not that I would say I’m suffering. Yeah, things are getting more difficult as time goes on, but I know I have it a lot better than many people who are dealing with a serious illness.

So I’ve come up with a new tactic to keep things simple:

Them: “How are you doing?”

    Me: “I’m okay.”

i_m_okay____by_julianwilbury-d5ursj6

Just Like That

I was having a good day. Me and my husband were playing video games and just hanging out. I was having fun, laughing and joking with no worries and then it happened. One second all was fun and games and then the clouds rolled in.

All of I sudden I felt lonely and despondent. My life felt useless, worthless, pointless and every other kind of -less I could imagine. I don’t know what triggered it. It made no sense. I hadn’t felt like that in months.

I haven’t been able to completely shake it and it scares me. I know that madness lies at the bottom of that hole and I’m so afraid of slipping. For several days, my mood continued to get worse but I think I’ve made a bit of progress since then. My mood is back up a few notches and while I’m not back where I was before this fall, at least I’m holding steady.

I hate that things are like this. It reminds me that no matter how great I think I’m doing, being bipolar means I’m always just hanging on by a thread.

That Glow

It never fails. Whenever a new anti-depressant starts to work, it gives me a warm, rosy glow. The one that makes me start missing people I have cut out of my life. I start to wonder if maybe I was wrong and begin to miss them.

Then it happens. I contact them and end up regretting it. It’s that anti-depressant amnesia that makes me forget the reason I wasn’t talking to those people to start with.

This time, it was my foster mother’s daughter. I hadn’t seen nor heard from her in over 20 years. I still don’t understand the thought process behind this one.

Dear Future Me,

Fight the glow!!

On to the next one

Just got back from Houston. I did scans again this week and it turns out PM1183 isn’t working for me and my tumor is still growing, but at least it hasn’t spread.

We’ve decided to move on to Taxol and hold off on the experimental drugs for now. When we get my coughing back under control, and if the Taxol has stopped working at that point, then I’ll try more studies.

I’m feeling kinda bummed about it, who wouldn’t be?  I know that things could be worse and I’m keeping that in mind. I can still see a way out of this cancer thing that involves me still living and breathing comfortably so I haven’t given up hope.

It’s hard though. My husband is taking this especially bad and this whole thing is really tough on him. He’s always been there to protect me and make things better, and understandably, he’s feeling quite powerless these days.

Kind of tired and feeling worn out. I think I’m turning in early tonight. Right now I just want to stop thinking of it all.