Tag Archives: Cancer

Cancer and Learning Disabilities

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I am three years into my cancer journey. August of 2016 was the month I learned my life would change. It’s been a hell of a ride so far.

A lot of people have told me they notice I have such a good attitude about the cancer. I tell them having agency in my own medical journey AND stellar at-home support are the keys to recovery with a sound mind. It’s an article for another time, but seriously y’all, being able to have choices was fabulous. With an out of control disease… having some control is NECESSARY. But I digress.

file cabinets

One of the interesting things I’ve noticed over the last three years is that the chemo stripped my mind of my normal coping mechanisms. For what, you ask. Well, I am pretty sure I have ADD. I say pretty sure because back when I was growing up, ADD or ADHD weren’t diagnoses. Not being able to sit still or listen very well were. Boys who had the wiggles and girls who daydreamed. All of that. It’s even more complicated because ADD and ADHD looks different in girls than in boys. And boys were the ones most studies are about… then… and STILL.

I’ve known I’ve had ADD since my early 20s when I was able to study such things at university. I figured out large quantities of caffeine, enough to keep one up all night in the form of “No-Doze” pills made me calm and withdrawn. All the same symptoms people taking who had ADD or ADHD and Ritalin, Adderall, etc., reported. It was enough tomato me look into why this would be. Thus, my amateur diagnosis of ADD. Because I’m not hyperactive. Just distractible.

As a child without a diagnosis, no one taught me how to cope with my world with the way I encounter it and how that didn’t work for the community at-large. I figured out that I needed low noise in the background to study. That standing up and walking for a minute helped. I learned how to stick information int the right mental file cabinet and I learned how to access it with ease. And I figured out how to get my body and mind to cooperate.

Chemo strips all of your mental coping mechanisms. That is, until you can re-trace those pathways afterward. But the way my brain is and the things that chemo did to it are both fascinating and frustrating. I am relearning how to cope all over again. With new behaviors. Some are old ones my brain is learning to use again. Some, though, are new ones. I don’t think I understood just how much my brain had learned to work around my distractibility or my desire to DO ALL THE THINGS AT THE SAME TIME, which is almost the same thing as being distracted. Being TOO attracted, if you get what I mean.

At some point in the last 13 years, I learned mediation. Well, I learned a form of it as an older teenager to help my brain stop whirling and go to sleep, but I mean I learned mediation deliberately as a thing in and for itself. One of the ways yoga has you mediate is to step back and watch what your mind brings up as you try to sit in nothing. Your monkey mind will have thoughts. What they are and how often thoughts come are interesting things to observe. Observing the ego is a fascinating thing. I don’t know what happens in other people’s minds, but in mine when I first started mediating, I would have MANY thoughts all coming in and out of my brain at different speeds. Lots of them and often. As I sit longer and longer in stillness just watching, my thoughts would slowly slow down. At no time have I ever had a mediation experience with no thoughts floating through. Even if it is one or two thoughts coming through every once in a while, I always have a thought running it’s narrative inside my head.

I am pretty sure mediation has helped me recover from chemo and having an ADD mind. Being able to sit and watch as my brain tries different things to get information into the correct filing cabinet AND be able to retrieve it has been interesting, to say the least.

It’s been three years since a diagnosis changed my life.

Hopefully, it won’t take eighteen to relearn or lean anew techniques and tactics and strategies to cope with my learning disability. My parents had to “donate” playground equipment to keep me in kindergarten because of my bad behavior as a kid, I’m not sure I have the wherewithal to make a “donation” to stay in society as an adult. Costs have skyrocketed, after all.

Breast Cancer and Other News Update

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It’s been a while. I feel like it’s been an eternity. It’s been months at least. And that’s because cancer treatments kick your ass.

No, really.

I’m not sure if you’re aware of it, but it the treatments that’ll kill ya. Seriously, the business of fighting for your life against a vicious disease is a hard battle. And I am fatigued. But I am coming out of the fog.

My hair is the shortest it’s been since I decided I wanted to be a buddhist monk at 3 or 4 and had my mom shave my head. I tried to keep it, y’all. And if my chemo had not been the worst, most dangerous and strongest chemo around- they call it the red devil, if that tells you anything- I would’ve kept most of it. As it was, I kept about 25%. It just simply looked too terrible not to shave off into a boy cut and go all Audrey Hepburn.

Cold capping works. It just doesn’t work very well if you do the chemo I did. And then if you have a semi-formal event- like a college graduation that you can’t miss because it’s your oldest child and you wouldn’t miss that shit even if you were bald on the head and hairy on the leg- that you must attend without a baseball cap. So you go and get a nice short do. And proudly wear that shit to your son’s graduation. Proud and loud, bitches. I beat cancer.

I did. For right now. Cancer always comes back. They don’t talk about that. But it comes back. What you want is for it to not come back for a really long time, like 15 years or more. But my body scans tell the docs I have no other cancer hot spots. And the chemo plus radiation treatment plan kills rogue cells which have broken off and might be roaming free.

It’s been 5 weeks post radiation. The black skin is all gone off my chest. And almost all gone off my back. Soon, I will be back to my old self. Well, without one boob. And with a wicked fucking abdomen scar. But with my life. And my brain in tact. Not that my noggin has been much help lately. Chemo brain is REAL, yo. But slowly, I am coming back.

I attended a Master Class with Alexandra Sokoloff this past weekend. It was awesome. Got my creative brain and juices flowing. And I wrote the most words I’ve written since I started this whole cancer saga.

Anyway, here’s my new do. Hopefully, my hair grows quickly. And I am so glad this whole no hair thing happened now. If this had happened back when I was younger, I think I would’ve been completely devastated. As it is now, short hair is just another thing. I’m alive. And that is all that matters.

And here’s hoping I have many more words this week. And I want to do an update on my erotic gothic thriller story. I’ve got some ideas.

Now. I need to go write. And take supplements to try and get these strands GROWING!

I Have Breast Cancer… and other tales of horror

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I’ve been really remiss in taking care of my blog for the last year. Seriously, though. The last half of 2016 was mostly just trying to keep my head above water. I didn’t have the time or the energy to devote to my blog or even basic maintenance of the site in general.

That’s what a breast cancer diagnosis will do to you. Rearrange priorities. Right quick.

I’m losing my hair. I’ve lost a boob. And I’ll probably get radiation positioning at some point. The trifecta of shittiness. It wasn’t supposed to be like that. Me getting the whole package. Originally, when they first told me, I was only getting the basic package- surgery and then drugs and monitoring. But once they opened me up and took a look, it was more serious than the diagnostics indicated.

Listen, go get your boobs checked out. If you catch this shit early, you too can get away with minimal treatment. But if it’s more serious, you need the deluxe package and STAT at that. But this isn’t a service announcement for awareness.

Nope. It’s just a little heads up. And to tell what I’m doing. So. I originally had a surgery set and decided to cancel at the last moment. Believe me when I tell you that the people around you get REAL concerned REAL fast when you cancel a surgery to cut cancer out of your body. But I had a good reason. I wanted less surgeries. And the way my local surgery team wanted to do things didn’t align with the way I wanted them done. Plus, I’d found a team and surgical center willing to do it the way I wanted and who did the types of reconstructive surgery I wanted. The only downside was that I had to travel to obtain access to what I think of as THE preeminent DIEP team in the country… maybe in the world.

I wanted a DIEP flap for my new boob. I didn’t want plastic or silicon or anything foreign put into my body. Cutting cancer rout of my body was and is all about getting what doesn’t belong inside me out. Why would I put something else that doesn’t belong inside me in? The DIEP flaps allowed me to use my own fat- who knew all that baby fat was going to come in handy… and no, baby fat doesn’t mean MY baby fat, but rather, my babies’ fat acquired during gestation lol- to make a new boob. Some call it a foob. Fat boob. Fake boob. Whatever you call it… it’s mine. My new boob will gain weight when I gain weight and lose weight when I lose weight. It’s warm and jiggly and soft to the touch. Not that it can feel anything, but my hands can. And my eyes can see. One day, doctors will be able to grow us a new boob just like a new heart or lung or whatever, until then? Getting the fat cut from my belly and then shaped into a boob is about the next best thing. And the docs I flew to do these routinely. In fact, this is their specialty. They do these all the time. Which is important since DIEPs are microsurgery. Sometimes, lasting seven to eight hours for one boob and eleven to twelve hours for two boobs. And you want someone who does these all day everyday. Not someone who does things occasionally. I couldn’t be happier with my new foob.

So, I had my cancer cut out with immediate reconstruction. My local team wanted me to delay reconstruction, which would’ve added another major surgery to the two I was already slated to have just because I have breast cancer and I wanted reconstruction. My away team told me they would do it at one time and add in some extra fat to guard against the damage that radiation might do to the tissue. This was the crux of the issue with my local team. They wanted me to do radiation with a place holder in my chest- basically a temporary air filled boob. Wait a while and then do reconstruction. My away team told me they would pack my boob with extra fat and tissue so if there was any damage to the skin or tissue, the extra would take the brunt of it leaving healthy tissue underneath. And one less surgery.

I took the one less surgery.

The only thing my away team couldn’t do was save my nipple. They saved all of my breast skin, however. It was just that my tumor was too close to the nipple to get clear margins when they cut it out. This makes me sad. But I’m okay with it. Now. I realize I wouldn’t be able to feel anything anyway with my old nipple. So having a new 3-D one made later isn’t going to change things too much. But my skin was spared. So I am able to have some sensation where I wouldn’t if I hadn’t spared my skin. And maybe, over time I will get more sensation. That possibility is open to me because of the type of surgery I opted to do and the fact I invited on immediate reconstruction.

Because I opted for immediate reconstruction, I was spared the psychological smackdown of not having a boob or looking at a mangled boob. Because that’s what I kept finding. Women who needed radiation who had it with the temporary expanders who looked like burn victims. I never once looked at my foob and turned away in disgust or sadness. I look at it now and see the scar running vertical- just like a normal boob job patient, not a just a cancer patient. My scar is similar to women who’ve had plastic surgery to improve their boobs. And once the nipple is placed, it will look just like them.

Not everyone will focus on mental state or status. But I think when you are fighting a disease like breast cancer having the best state of mind is necessary. Mental status being good is KEY to kicking cancer’s ass.

Which is why I’m cold-capping to try and save my hair. It’s not working so great. In that I’ve lost a LOT of my hair to chemo. But I have hair after 4 dense dose AC treatments. And from far away, it looks like I have a full head of hair. So there’s that.

If you feel my head, it’s quite apparent that I have very thin hair right now. With patches of balding. But from a few steps away, it just looks like I have thinning hair. And from some angles, it doesn’t look funny at all.

Cold- capping is a commitment. It’s unpleasant. It’s not guaranteed. It’s a pain in the ass.

But I don’t look like a cancer patient. I don’t look like I’m going through chemo. And if I can get through my 4 dense dose T treatments, I will have walked through my cancer treatments mostly on my terms. With minimal impact by cancer.

Yes, I know I will be forever a cancer patient. Always needing to be monitored. But if I can move through my treatments- surgery, chemo, radiation- on my terms, my mind and body will do well. I’ve always believed that the body supports the mind and the mind supports the body. By making the choices I’ve made, I feel integrated thus far. And I know cancer is getting it’s ass kicked!

A good mental state is the reason why I didn’t cancel my reading in Baltimore. I’m pretty sure it’ll be a good time. I might or might not have hair at my Baltimore reading… come see me if you can, but I will have all my snark. I also didn’t cancel my erotic gothic horror over at Romance on the Rocks. I did decide to do it quarterly instead of monthly, however.  And I will have met cancer on my own terms. With a foob, thinning hair, and reading ALL the smut!

 

Romance, Erotic Gothic Horror, and Breast Cancer

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I’ve been writing over at a group blog for the past year, so I haven’t done a full post in a while. Well, shit just got real, y’all.

First off. I’m writing a serialized erotic gothic horror over on the Romance on the Rocks blog. Well, gothic-like. Mostly, it’s set in the deep American South. Which if you think about it could be gothic horror inspired in some respects. I won’t have completely open doors because we have an all age readership over there. So, I will be using all the tools in my tool box to be erotic without showing erotic. What I might do is a companion open door portion of that story over here on my main blog. Ummm, I might have a few details to work out before September 15. I’m still gelling it in my mind so until I have all the deets finalized, I know about as much as you, dear reader.

Second, I have the cancer. Breast cancer to be exact. And no, I don’t know much more than that. I knew when I went in for the limp that something was wrong. And I prayed and hoped it was a cyst or benign in some other way. It wasn’t. So, I’m having a pity party for a day and then I’m going to get back up the next day and kick cancer’s ass.

If you know me at all, you know I don’t want any body work done. Living in LA and seeing the enormous amount of body work people got done just because really turned me off. I wanted to age gracefully. To show our young women that there is grace in aging. Or least, some semblance of it. I don’t color the gray right out of my hair. I have killer bright silver hair that looks like kick ass highlights, or at least, tinsel. I love it. And I also felt this way about the rest of my aging body. My tits have fed children. OF course, they sag. They’re supposed to at this point. But they’re still fabulous.

Well, until they betrayed me. I won’t know a treatment plan until I go see the boob doc for the first time. I haven’t decided anything yet. But the thought of getting fake boobs makes me sad. Even if I didn’t get them because I wanted, I’m getting them because I need to. Mentally that doesn’t matter. I still feel like my original life plan of aging gracefully has been stolen from me.

But I swear that I won’t let cancer not one more piece of me than I can safely allow.

Still, I will need some words of encouragement. And some patience. Because I have a feeling that a couple of my serialized installments might be late. I will write as long as I am able. If I can’t, I won’t. But writing has helped my sanity so immensely that I will cling to it like the life line it is.

Patience and Love.

What else does anyone need?

Well, maybe a little romance.

p.s. Go get your breasts squished. Go get checked out. Even if it’s for no reason. Don’t listen to anyone else. Listen to me. It might save your life.