Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.

He has since died, and I took on the cause of making cancer care more transparent for everybody.

Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."

I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.

I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."

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Friday, February 19, 2010

Parenting with Chemo Brain

I am a huge discombobulated mess.
My brain might as well
 be malfunctioning mush with randomly firing synpases zapping messages at a whim forcing me to scramble in disorganized circles claiming I'm "getting ready" or "going somewhere."
Studies show The effects of "chemobrain" are seen, probably as a side effect of stress, before any therapy even starts. 
I tried everything to prevent the forgetfulness, memoryloss, disorganization and plain old brain chaos that comes as a side effect. 
First, I organized my house so everything had a place. Who needs to remember if it's a habit? I kept up with activities to save my mental faculties: reading, writing and learning, but still about march 2008, when the stress of a 2nd transplant and my husbands illness was too much I began to feel the big effects.
 I could no longer make plans. I had no long term plans what so ever! I had always been a planner. My whole life was quesi planned then suddenly the future was an abyss of nothing. I'd try to make plans in my head for the following day only to be met with a frustration headache that once only hit when I tried to attempt calculus. 
I thought it was the stress. I thought maybe it was grief after having been disappointed so greatly by the return of my cancer and all I had looked forwrd to with anticipation only to be disappointed.
Maybe it was a self protective mechanism. 
I knew the chemo, transplant and radiation contributed. I also admitted that, yes, pr my pain anxiety or sleep meds had something to do with it.
Again I tried to prevent any further decline. I started to write everything down, sick of people using my memory loss to scapegoat things. I created my own electronic memory.
 I never imagined it could get worse!
 Now I can barely make it out the door without my mind darting in a hundred different directions it doesn't need to go. 
Do I have enough money, food, water? Do I have my medications? What about x? Does he have his drink, ds, bag, whatever? Then, inevitably, I'll make it out the door with enough granola bars, but forget my glasses, which I NEED. 
Today x and I went on an adventure to the boston aquarium. We call our excursions adventures. 
It shouldn't have been a big deal. It's right down the road from heather's, but it felt like a big deal, probably because growing up cities like boston were far away and trips wre rare family events. 
I was treating it as such. 
Of course, just to make things difficult, in true worst case scenario form, last night p woke up with a fever, coughing and wheezes with retractions. 
Retraction are a sign of respiratory distress.
 I made sure to take my levaquin before I left so as not to bring anything down only to get caught next to this infection. 
Prednisone is an immunosuppressive drug so with this I'm incredibly immunocompromised in addition to my all ready weak lungs. Whenever someone announces an illness in my presence or presents an illness, my mind shuts down. Fight or flight kicks in. 
 I have got to get out- immediately, much like a caged animal confronted with a predator. 
This weighing on my mind, I gathered x and my things and escaped the house only to make it safely to the parking garage, look around, and realize the ticket for parking I had just snatched out of the machine two seconds earlier was missing. MIA. 
I had put it on my steering wheel next to my glasses case, at least I thought I did. For all I know I crumpled up the piece of paper and ate it (definately a possibility, especially with the steroids).
I might as well have just chucked it on the ground and stomped it. Two minutes after getting it, it could not be found in my purse, pockets, floor, coat, bag, you name it, not there. 
My $13 parking had just gone up to $38. Ouch.
 Thank good ness for dear heather who has an aquarium membership that got us in free. The aquarium is great, my budding photographer and animal lover loved it, especially the animal ambulances which could be mambulances (mammal ambulances) or animalances (animal ambulances), but not quite worth $50 for the hour it takes to conquer.
 At least Boston even takes good care of its marine wildlife. 
I did find it pretty ironic that there was a gigantic "legal seafoods" across from the aquarium where we could go eat after x saw the beauty of living under water wildlife. C'est le vie. 
We didn't eat there though. X missed his cousin pierce soooo bad, or so he said convincingly enough to drop "disney on ice," which I so desperately wanted to see. 
Despite the brain chaos and disappearing ticket, we did definately have an adventure HX style, and made it back to the condo safe and sound.

1 comment:

Anonymous said...


I have a wbc of 0.3, anc .11. I want to know how in the world you get up the courage to go to a crowded public place then go eat in restaurants. I can't bring myself to go out of the house in case someone sneezes in my direction. I want to go to the Boston flower show when it opens but am too afraid of being in public spaces. How do you get over this. YOu are so courageous