Showing posts with label chemo brain. Show all posts
Showing posts with label chemo brain. Show all posts

Monday, November 8, 2010

Broken and Whole

I am so broken right now. This flu will not go away and I spent the entire last night in violent coughing fits. It was so bad that my sons came in demanding to know if I was okay.

This last year I've been slipping off of some of the physical progress I've made. Last year I was hooping and having so much fun with it. I was taking an arthritic water fit class with disabled elderly people and they were kicking my ass but I progressed quite a bit. I was also happily hiking up the local mountain.

When I was taken off the last of my viral and immune suppression drugs last November (that kept the viruses and graft vs host at bay) I immediately caught the H1N1. I became extremely ill and my immune system was sent into overdrive making the graft vs host flare. So much for all the people who cried foul and said the H1N1 was a mass scare tactic. My son with asthma got dangerously sick and I spent the rest of the year trying to recover. It was well into the summer before I started regaining some energy.

I've gained 23 pounds, gaining back the 15 I had lost to still be 27 over my normal weight. My muscle mass has disappeared, I have huge bags under my eyes and I just feel lousy.

One thing that has improved immensely since last year is my memory! I am sooooooo glad. I was really afraid that I would never be the same egg headed university geek again. I loved my mind before all this happened. I had such huge capabilities in that area before and now that it's coming back I feel a lot more like me. Not physically but mentally.

I don't struggle to remember small things anymore. I still write everything on sticky notes but I can hold an address in my head and even the directions of how to get there. That is lightyears from where I was last year.

My mind is still quiet. My brain used to be in constant overdrive and I could never realax or have a mental break from anything. The first huge difference I noticed in myself during chemotherapy was the quiet void in my brain. I usually had 8 note/sketch books on the go to scribble down all my ideas. Writing them down released some of the pent up anxiety of constantly having the ideas and then perfecting them, detail by detail. It scared me when in the hospital I sat there, empty, no ideas rolling off me into my notes books. The pages were quiet.

I accept this sense of peace and serenity of the quiet mind now that I can focus my thoughts.

So for the body..... The problem with all of my attempts at regaining health is the simple inevitability that I will crash. Whatever I do, it seems to go well for a while and then my body starts shutting down in exhaustion, a graft vs host relapse, in pain or all of the above. So I rest and recover and then try try again until the next crash. The funny thing is, things usually feel fine with the activity and I think, "I can do this! Woohoo!" and then CRASH. I'm off my feet for days, weeks or months. It's so frustrating.

Whenever I discuss this with my doctors, they tell me to do less, tone it down, scale it back....

I've finally decided that after trying wholeheartedly for 4 years, I don't have a clue. So I signed up for a course called Cancer Transitions. I'm really hoping I can get a lot out of it and apply it to my recovery.

So far one thing has stood out to me in it. There is another person who has had a stem cell transplant and that person has the exact same problems as I do. We get going on something, are feeling fine and then the crash comes and we are laid out until our bodies allow us to get back up again. I was so grateful to hear someone else describe what it's like to hit a dead stop and not even be able to will your body to keep going.

So these are my rambling thoughts for the morning.

I am so grateful that I'm so resilient. I'm so glad that I know that the way forward often has relapses where it looks as if we are falling backwards. It's all a part of moving forward. Moving is not so bad, it's the stagnancy that gets to me.

So if this damn flu would just go away....

Monday, July 26, 2010

Chemo Brain Drain

Of all the thing I've lost, I miss my mind the most. -Unknown

It's been 4 years and I still struggle with my memory. I'll never forget being in the hospital getting my first week of chemotherapy and feeling like my brain was complete mush. I forgot things as soon as they entered my head. When I mentioned it to the nurses they just sort of giggled and said, "Oh that's just chemo brain".

Because they laughed it seemed like it was just a small problem but I was horrified. I assumed it was only temporary but as I looked into it, it seemed to be less and less so. I spoke with a woman 2 years post transplant and she kind of lightheartedly laughed about it too. She told me that it hadn't really gotten better, she had just learned ways to cope with it.

I was not impressed.

When I was zipped off to my new life in the hospital, I was in the throws of academia... now I apparently can't even spell academia right.

Some people get angry when they are told after chemotherapy that they'd never be able to have children. Well, they told me that and I wasn't bothered. I was, on the other hand bothered that I wasn't told that my mind would be altered. It was like a little joke of an after thought.

Even as I write this it makes me really angry. I realize there wasn't a choice, I needed treatment or I would have died but really?

*crack out the violins because I'm going to whine*

My mind was my greatest asset. I am smart. My memory was like a steel trap. I could learn thousands of facts in a day and ace a university exam that afternoon. My grades in my classes were at the very lowest %92. Usually I was %96 and higher and I worked hard for it. I often wondered how high my grades could get if I wasn't single handedly raising my three sons at the same time. I excelled under pressure and had honed my skills to ace the GMAT exam, I wanted nothing lower than %100. I was a multi-tasking Queen.

My memory made me feel powerful.

After my three rounds of chemo before my transplant, I retrained my brain to be able to read again. At first my eyes couldn't focus and I was reading the words blurry eyed but after a few weeks I was reading at a normal speed again.

After the transplant is another story. I received the highest doses of chemotherapy possible to prep my body for the stem cell transplant and my mind went with my old immune system.

When I was home and it was still early days I watched an episode of Judge Judy where she was yelling at someone, "would you rather be stupid and have your morals or smart and no morals?" I was so scared and unsure of whether I had either.

Things have gotten a lot better since then but my memory is still lacking. On my journey of finding out about chemo brain and it's effects I saw a neurologist who MRI'd my brain. I was not leaving anything to chance, I wanted my highly functioning memory back. She told me that there was no obvious damage... yet here I am.

She explained that they think it's like each cell in the brain being a little dehydrated. As a whole it's fine but each cell is just slightly withered.

I also learned that the effects of chemo on the brain was discovered by educated women who weren't happy about their diminished cerebral capacity. They complained and they complained hard and finally someone took notice. Everyone I spoke to assured me that it was real and not in my head. My inner response was, "Duh!" There's no need to convince me, but I guess the medical system was just catching on that chemo brain is real.

So, as I wait for the medical world to catch up, I constantly walk around in circles wondering what the heck I was looking for, or what the heck my post was going to be about?


Oh yes, my new coping mechanisms. Currently I am sticky noting a wall. I review that wall as I sit at my computer because I feel as if I have lost my head. I have personal theories that chemo brain is also wrapped up with early chemical induced menopause, because why else aren't the men complaining? For me, I know it's also tied into not being able to sleep but that's a whole other post. You can't make memories without sleep.

Shame on the medical community for treating this as a joke. My super powered, previously high achieving brain does not appreciate it. And comments like, "welcome to everyone else's world", when I lock my keys in the car for the hundredth time and kill my car battery because I left my lights on for the zillionth time, don't help either. Ditto to, "you're getting older, that's what happens".

So this has created new depth to that old saying, "Of all the things I've lost, I miss my mind the most."

I really, really do. And I'm really not sure what I'll do when that sticky noted wall has reached capacity.

*I'd love it if you could post your personal coping strategies for memory loss in the comment section. Then we can all benefit by sharing*

Sunday, September 27, 2009

Series of Unfortunate Events

Damn.

Son who is almost 16 was asked to go out to a girls birthday party which consisted of driving around in a limo. Son was very excited because he's never been in a limo, asked to stay out late for the first time.

He is also finally making new friends at his new school and is a very good son so I reluctantly say yes, wanting to allow son a new experience that I can't afford to give him. I take down all relevant phone #s, the address etc. send him out with $15 which is a huge and rare treat.

Had an overly exhausted day due to having a cold but waited patiently for him to call so I could pick him up. Son calls slightly later than he was supposed to at 2am, what was I thinking?

I put youngest son in car and drive out to pick up middle son. He says he'll meet me at the pool so I don't have to drive around finding the house while I'm insanely tired. It's near a McDonalds and my throat is scratchy so I tell youngest son I will get him fries so I can get a hot chocolate.

As I'm driving well within speed limits bright flashing lights go off behind me. I pull over thinking this is my first random check ever. Police officer comes out and tells me my insurance has expired a couple of days ago.

Jaw hits floor of car.

Police officer realizes I have never had a driving violation or accident before and gives me a lesser type of fine and calls a tow truck. Gives me the ticket as I'm perspiring wondering how I will get to son because I have forgotten the address and #s at home. Police officer rolls his eyes like I'm a bad parent for allowing my 15 year old to wander the streets partying his ass off.

I don't own cell phone, neither does son because we can't even afford cable. Other than rolling his eyes officer is very kind, so is tow truck driver who flags down a cab. Police officer has instructed me that tow truck driver can't take us because he only has two extra seats and I also have youngest son with me.

Tow truck driver says he will meet us at our house. Cab driver is also very kind and says I'm lucky that it wasn't a drinking driving violation. I exclaim that would never happen because I would never drink and drive, duh, in my squeaky sore throat and my slightly slurring speech, due to being horrifically over tired, startled and beyond my functioning level. It's now 3am and cab driver rolls eyes about my son roaming the streets at all hours. Notice that cab driver had just come from McDonald's and is eating fries.

With cab we start looking for son. We can't see him so cab driver asks if he has a cell phone. I say no. Then he asks if I have cell phone. I say no. Then he asks if I have phone number of who son is with. I have forgotten it at home. I get out of cab and start hollering in the dark until son morphs out of the shadows. I have trained him well about how to stay out of harms way. He asks why the heck I'm in a cab.

Cab drops us off at home.

4am
$15 for sons night out
$10 of major chocolate splurge to appease younger son who felt left out
$89 ticket but luckily not $600 that officer threatened
$30 cab ride with no tip added
$106 tow fee
$50 to get my new address on my license tomorrow

Perfect 20 year driving record shot to hell.

= $300, most expensive night of my life and I didn't even get to do anything other than stand in cold.

+ Overcome by slightly irrational fear of marrying a cab driver or tow truck driver instead of a university professor because they are very kind and cute with handsome bald heads and I don't get out enough and they are damn fine looking.

Thank God for credit cards. Fuck chemo brain to hell.

Thursday, July 10, 2008

Mortification


Oy.

I have done everything wrong today. When will this chemo fried brain drain go away? It's been two years.

Maybe it's because of my medications? Maybe over exhaustion which I deal with every day. Maybe it's because my cells are all fighting with eachother? All I know is it takes me 3 times as much energy to do the same simple tasks that others would do easily.

The reason is because I make mistakes. I drop my change when I try to put it in parking meters, I lock my keys in the car with the lights on so I need to get rescued, pick up the keys and hunt down someone to jump start the car. I get lost trying to find doctor appointments at new locations. I can't make decisions and need help to pick out a birthday card for my new niece. Then I realize I've missed the home care worker who comes to my home.

I try and stay composed and act as if it's all as smooth as pie but I think I have a chunky apple pie. And it's probably a really high quality and delicious cinnamony apple pie with nice flaky pastry, but I digress. I also get easily distracted and run off topic. I go to do one thing which leads me to another and then another and then I remember what I was supposed to be doing in the first place. This makes the most basic things difficult.

If things are quiet and there is nothing new to contend with, if there is no scheduling needed or papers to fill out, no wrestling teenagers, people calling, visitors and I've had enough sleep then I'm fine.....mostly.

Today has been exceptionally frustrating because we had several appointments. The more things there are to do, the more scattered I get.

I feel like a bit of a twit.

Friday, April 25, 2008

Unicorns and Rainbows



Dear Family and Friends;

I am not depressed.

I had cancer.

Despite my body being exhsausted and in pain, I am feeling emotionally better than I have ever felt in my life. Despite being hyper aware of my own mortality, I feel fanfuckingtastic, and I say that without sarcasm.
I am happy.

I hate having constant diagnoses of depression tossed at me. I hate having to defend my emotional state on a constant basis. I hate hearing,"Maybe you're depressed?" I realize that you care deeply about me. I also realize that you need to validate your own feelings of what I must be going through.

When you look at me, I know I look pained...It's because I am, in fact, in pain.

And, No I don't want to leave my house. No, I don't want to go out to social gatherings. I was separated from my family and my home for over 6 months. I just want to be here in the beautiful silence and comfort with my children. It's what I dreamt about for every second of every day, those 6 months.

I also realize that I don't fit the mold of what you think a cancer patient should look like. I'm not spouting enlightenment or donning pink runners. I laugh at my myself and my situation whenever I can. I have good days and bad days like anyone else.

It feels pretty defeating when I feel horrific and you say I look good or I'm feeling good and you say I must be depressed. When I tell you how I am doing I am telling the truth. I don't really have any reason to make anything up.

Maybe I'm in denial? Maybe I'm kidding myself that things are good...or maybe not. Maybe it's real. The cancer, the treatment, my new chronic conditions. Maybe I've chosen to not worry about it? Maybe I've chosen to love every day possible, whatever it brings?

Yes I am constantly tired. Every cell in my body has been bombarded with chemotherapy. Every cell in my body is healing. Yes my memory is bad. It's called "chemo brain" and is a medically documented phenomenon.

I had cancer, not a cold. That is what you see when you look at me. Don't misinterpret my symptoms or diagnose me. It is what it is.

I realize that the weight of what has happened in my life and my feelings don't seem to match for you. I am just living my life, healing and feeling quietly grateful that I am still here.

I apologize that I'm not shitting unicorns and rainbows....but not really.

Monday, March 3, 2008

Oh, yeah

My tenant woke me up last night grinding his beans at 2:00 am. Who DOES that in the middle of the night?

So despite not having the best sleep last night, I did something naughty. Okay, it wasn't so much naughty as it was just pushing my boundaries way too far. I know that's what kind of person I am, running before I get one foot out the door. I just anticipate that the door will open by the time I get there. In this instance I anticipate getting well enough,

barely

to take a Photoshop class.

A couple of weeks ago getting myself to the school would have been all I could have managed. Today I managed to get there and have a passable amount of focus for an hour. I had to borrow money and dicker until they brought the minimum 3 hour long sessions to 2 hours. I can't sit through a normal class and I can't focus for 3 hours. Have I said Fuck Chemo Brain and Cancer before?

So, anyway, it was exhilerating! Better than sex (like I have any frame of reference for that).

After one hour I started losing it and it seemed as if she were speaking an unknown language. I'm a bit afraid I may be throwing money out the door because I may not remember most of what she taught me but I loved it. My teacher is such a wealth of knowledge. There is SO much to do and learn in this world. I'll be pissed if I don't get my full run at it.

I've had too much excitement today and I'm fading so, I'm out.

Oh, and I meant his COFFEE BEANS. I know what you were thinking.

Wednesday, January 30, 2008

The Flaming Joy of Menopause

I believe I've discovered a renewable untapped energy resource. As I write this I am stripping down to my tank top due to an inner surge of post nuclear powered heat. My head becomes red at random intervals and I must remove my clothing. The slightest amount of emotion or warmth transforms and compounds into an abundance of menopausal energy. A hot shower can leave me with hours and hours of an overactive amount of body heat.

Think of the global implications! If we could harness the power of the thrashing restless nights, let alone the heat, we could lay off our non renewable natural resources. The emotional swings of a few women alone could power a small city. My chemo/menopausal forgetfulness which makes me pace around the house could charge a light bulb, at least!

I've heard a theory that raging into early menopause due to chemotherapy is much more severe then coming into it naturally. Either way the concept is mind boggling. This is supposed to happen at some later point in your life? It seems weird and unnatural to me.

We might as well capitalize on it!


I think I may win the Nobel prize for my ingenuity.

Tuesday, January 22, 2008

Lists

Hmm. I feel completely muddled. I feel a wee bit better today so I sat outside in the sunshine. I sat in my lawn chair on my patio soaking up all that Cancer Society recommended vitamin D. It was warm despite that it's winter.

As soon as I feel a touch better my mind races with all the things left undone. I'm behind a year and a half. My fake Christmas tree needs to be put away. My broken van needs to be sold and hauled away. My bedroom needs to be unpacked (I've been here for 8 months). I have projects which I'm working on at the speed of molasses. I have an art show in 3 months. Where do I start?

Well, I started by making lists. I haven't listed everything because I'm sure that would cause my brain to implode and THAT would be gross.

I put a few things which need to be done and the steps to complete them underneath because I can get stuck so easily by not knowing where to start. This Chemo Brain has fragmented my memory and my ability to concentrate on tasks. I was a high achiever before they blasted me with Chemo and I still have that high achiever screaming to get something done. I seem to be at the perpetual idea stage and I will be until I get some physical ability back.

Well, I did get a few nagging things done and it feels pretty good. Mostly because I got to scratch them off the list.

Oh, the satisfaction...I think it's the closest thing I'm going to get to an orgasm right now.