Monthly Archives: June 2012

Chemo Brain… the gift that keeps on giving

People think I’m kidding.  I know they do.  I can see it in the faces of my family members even… so I know other people don’t get it.

Once upon a time, I can vaguely remember…  I used to be pretty much on the ball.  I know I’m not stupid.  I graduated with my BS (with a dual minor) in two years and four months… while raising two toddlers.  And I maintained a 3.45 qpa.  I have an MBA.  I’ve published reasonably decent geek books.  I only had to re-take one class (NEVER EVER EVER take 21 credits in a semester and try to maintain any kind of real life at the same time)

Not bragging… I don’t really think of it as something to take bows about… I did what I needed to do.  I “got-er-done”.  I’m kind of just reminding myself that, once upon a time I could multi-task and I didn’t have the attention span of a gnat………….

hey look… shiny chicken!!!!

I’m coming to understand (through some very pointed research) that what I’m dealing with is pretty much Chemo Brain.

I used to think that having kids sucked the brain right out of you… that as long as you were talking baby talk the brain cells were jumping out your ears at night out of sheer frustration.  But I did my BS with a 2 year old and a 6 month old.  That really doesn’t hold water so much.

Now… Now I have to put my headsets in at work to drown out the people in the nearby cubes just to get my work done day to day.  Without the headsets and random music, I would end up sitting curled in the fetal position in the bathroom crying hysterically because I can’t THINK straight.

When I’m trying to make a phone call and someone is just making “being in the same room and moving around” noises, I get frustrated and I have to leave the room and lock myself in the bathroom or I can’t quite deal with what is going on on the phone.  I can’t remember what number I’m supposed to push, why I’m calling, or what I’m supposed to be doing.

I’ve noticed my hearing changing.  I can’t hear half the time and other times (when I’m on the phone with my headsets in to talk hands free) someone runs water on the other end of the phone, or opens an envelope, or farts sideways and I’m freaking out and screaming so I can hear myself over the din.

I get frustrated with myself so much more easily now than I ever have before… because I just can’t THINK the way I know I used to be able to think.  It’s like I’m thinking through white Karo syrup.  I can see through it like it is window glass, but trying to get through it (to think through it) is like trying to swim through oatmeal.

I’ve even managed to pretty much convince myself that it is ME.  The problem is something fundamentally messed up with ME personally, not the me that is fighting RA.

But I remember that this isn’t me.  This isn’t the me I used to be… now, I need to focus on what is really going on and coping mechanisms to help my head not explode trying to deal with my new reality.  And I realize that this is part of what is happening to a wonderful friend of mine who is fighting with way higher doses of real Chemotherapy (like low dose poison for years isn’t real… duh) even if I don’t think she realizes it herself yet.  Maybe… just maybe I can help…

I found this article today and it has some coping skills, some things that maybe I can incorporate with my Yoga and Meditation practice that seems very much to help me when I can remember that I matter enough to work it into my routine.

I think, though, that the best thing I’ve learned is that, this is really really real and that it isn’t just me.  Maybe I can share this adventure with the rest of the people dealing with the continuing adventures of Captain Chemo (whether it is for Cancer, or HIV, or RA or any other condition that they prescribe this wonderful poison to control).  My reality isn’t going to change any time soon.  Maybe, just maybe I can learn how to cope and deal.

Here’s to hoping you have a fog free week.

 

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Gallery

Just a Hysterectomy

Got your attention, huh? The reaction to that statement seems to be kind of varied. My OB-GYN (who is an AWESOME doctor… I lucked into one with a good bedside manner when I went on a panic stricken hunt for … Continue reading

Adventures…

I’m trying to decide how I really feel, right now, about adventures. I’m trying to stay my Mary Sunshine self… but it isn’t working. I’m scared and thinking that maybe not knowing really isn’t such a bad thing.

I was having weird hip pain for a couple months. If I keep taking industrial strength Napproxin, it takes the inflammation out and takes the edge off the pain. I can stay reasonably good. Sometimes it hurts a bunch… but mostly I’m okay. But I can’t keep taking industrial strength Napproxin indefinately… so my Rheumy said that (if I stay off of it for 24 hours) if it hurts at least a 5, I should get an MRI to find out what is going on.

It hurt more than a 5… so I scheduled the MRI. It was with contrast. I should have known this wasn’t going to turn out as expected… when I got to the local MRI place, the machine had JUST broken down (yay me) and I would need to wait an additional 5 hours and drive 35 miles one way to get to the only other place I could get in unless I wanted to wait another week.

No… I was not going without NSAIDs for another however long… 5 hours it was…

I like the one where I ended up going. They gave me music and a cloth to cover my eyes and they didn’t blow out my vein when they gave me the contrast. It still took an hour, but it was a less sucky hour.

That was Thursday.

I knew my Dr only works till noon on Friday and I didn’t expect to hear anything then…

Yesterday, when my phone showed her office… I expected her nurse… or PA or whatever…. It was the doctor… not the best sign…

The good news… my hip is fine. I have a little bursitis in the joint which will clear up with time. Also reasonably good news… what is going on isn’t my back (L5-L6 vertebrae) or the nerves, disks or degenerative disease.

OH boy… the GOOD news is that the two things I was concerned with weren’t involved. WHAT was the bad news. NO no no, I really probably don’t want to know…

My uterus is enlarged. And being pushed out of its normal position by a fibroid tumor that is the size of my uterus. I need to find an OB-GYN who is willing to see a new patient this week (THIS week? REALLY? geeze) to talk about what now. I found one. It wasn’t easy, but I found one (most won’t see new patients before middle of July). Apparently, my uterus is pushing against my hip.

I had a back MRI last year that none of this showed up on. THAT MRI showed my ruptured disk and pinched nerves and that happy stuff… but no one saw this… so whatever is going on has been in the last year.

So, I have an appointment. And a computer and an internet connection. So, I’ve been digging. I pretty much know what I’m going to hear on Thursday. I’m going to need a hysterectomy. I’m not sure when I would get surgery, but it will prety much mean a hysterectomy… I told a friend this morning that it will only be a hysterectomy. She is thirty something and fighting her own battles but when she heard “only” a hysterectomy… I could almost see the astonishment at the comment. I had to smile… I understood the astonishment. It was an unsual statement to make.

But… I’m looking down the barrel of menopause anyway… and I get migraines all the time… and… if this will help get rid of the problem, then, it really is just a hysterectomy.

I have a computer and an internet connection… and I did REALLY well in online retrieval class (which is either a really good thing, or a realy bad thing, depending on your perspective… ) I know that I have a 1 to 2 in 1000 chance that this is cancer (a little higher chance because it is associated with menopause).

I know that, if I have to have surgery, I have to stopy my Humera… Last year I had to stop my Enbrel and after I restarted it, It never worked as well after that. I’m scared that will happen with my Humera. I don’t want to go back to having more than 2 involved joints. I don’t want to have to be tied to infusions every 6 weeks. I’m not sure if I’m just fundamentally messed up or not… but I’m more scared of what might be than what probably will be… maybe because I know what happens when my RA gets pissed…

So, my adventure continues. I’m not sure I’m up for this one, but… it is what it is…

Mall Walking

Okay… so… I’m trying despirately to make the most of the new office space location.  I can’t make much of my 3′ x 3′ desk that has to house my PC tower, two montiors, phone, mouse and keyboard and coffee cup…. Hell, I am LUCKY if I can put a steno pad on the freaking desk too… although I did manage to put up my electronic picture frame so I can at least annoy my boss a little!!!

Poking fun at the smoking zoo, earlier this morning was kind of fun…

At lunch time I braved the 90 degree heat with 80% humidity to venture over to the nearly defunct mall next door.  Mall Walking in a nearly deserted mall is great!!!   There were a few shoppers, a few workers holding down the walls, and several people in the food court… there are some interesting quirky stores (even a Hot Topic) left in the mall… even if there are LITERALLY no anchor stores.

The water features are still working, the AC is working, several other people were wandering aimlessly around… a couple actually power walking.

It isn’t my favorite mall (NO Disney store… eeesh) but it will make for a nice place to walk in the heat… if it doesn’t kill me walking the two blocks distance from the office door to the mall doors.

Am I being too mary sunshine here?

Gallery

The Smoking Zoo

So… we moved (TEMPORARILY, I’ve been assured… but I’m not taking any bets on how temporary) to new office space (while they are renovating our old digs). My commute is shorter (so yay) but getting back ON the interstate to … Continue reading

How Do You Deal With The Well Meaning Advice?

You know you get it. The advice about how you should be dealing with what is going on in your body. Cut out red meat, fish, all meat, fat, sugar, carbs, gluten…. Take spoon fulls of cod liver oil… take spoon fulls of <insert snake oil of the week here>… etc.

How do you deal with it? I’m grappling with how I think I should deal with it.
I mean, if I were to TRY to take everyone’s advice… I would be out in the field grazing with Bessie. There are carbs in carrots and apples and oranges and blueberries (probably in the grass Bessie eats, too… I can’t seem to find the nutritional information on that… ). Gluten free? I don’t have enough money to completely outfit my house with “Gluten Free” pans and everyone else’s pans and never the two shall ever touch the same dirty dish water and then spend a small fortune on totally gluten free food, especially after I already spent the umpteen hundred dollars getting tested for gluten sensitivity.
I’m trying. I’m really trying.
I drink my tea without any sugar or any sweetener (at least 97% of the time… sometimes a tall glass of sweet tea is just way better than anything else). I drink quarts of water. I don’t walk as much right now as I should, but what set me off on this tangent is the fact that my hip is hurting a LOT lately and the NSAIDs are taking the edge off, but if I stop them, the pain is back… I hurt… and I have this way for the last 2 months or so.
I already feel like a freak. I get caught washing my hands in the bathroom humming happy birthday (TECHNICALLY, I’m supposed to wash my hands for 2 complete “Happy Birthday To You” songs… with hot water and soap… even when there is no hot water only whatever temperature they have the motion senstive faucet set to). I try to not touch door knobs and elevator buttons. You think I don’t get really unconfortable stares for that? And using a paper towel to touch the buttons and handles on the communal coffee pots/makers at work? EEESH. If grazing with Bessie would make me NOT have to deal with stuff like that, you think I would still be spending $3000 a month for the 6 tummy shots I take a month plus the pain pills and the other meds that I take every day.
I know they mean well. I know that whatever they are trying to suggest has helped other people with things, maybe even with this thing (whatever this thing is)…
I tend to just smile and take it for the help that I know it is meant to be… but there are days… there are really really days… when I want to be my snarky self and say something like… well… like this…