What About Our Brains?

So cancer didn't kill us. Our cancer treatment didn't kill us. But our brains no longer function as well as they did before.

At my knitting group at a cancer support center we routinely forget each other's names.... and claim chemo brain.

I think there are several causes of chemo brain. The biggest and most important one is the so called 'cognitive dysfunction' as a result of the lovely chemicals they pour into us during treatment. There is a lot of information on this as well as the awareness (finally) of the need to do something about this.

I strongly believe that another cause of chemobrain is the stress and ensuing PTSD that causes us to have lapses in our memories as well.

This raises the issue that while a cancer diagnosis and treatment is harsh on our bodies and on our minds, there needs to be a concerted effort (and more research) on how to improve post treatment care and how to prevent more issues for patients.

From a patient's point of view, a cancer diagnosis should not be a life changing event. I can be a life affecting event but it should not alter you forever - either emotionally or physically.

There are many ailments out there without cures but then why is 'cancer' the only word which is so scary? We need to take the fear out cancer and the injuries out of its treatment. This would help our brains a great deal.

I Can Be Such An Idiot

Let me tell you how much:

• Saturday I was at a craft show. At the end when I was packing up, I could not find my keys. Anywhere. I dumped out my purse twice, looked through everything I packed, checked all my pockets, several times. I was going nuts. I couldn't find them. I asked the few people that were left to see if any keys were turned in. Nothing. Finally, I was calling AAA and dumped out my purse again, and there they were. Talk about 45 minutes of stress!
• Yesterday while leaving a doctor appointment I pulled out of a parking space and clipped the car next to me. In front of the owners. My car only got a corner broken off one of the hub caps. Their car has a scratch on the bumper. They are going to see what the damage is going to cost and get in touch with me. I was mortified. How can I clip a car when I am pulling out forward of the space I backed into. MORON ME!
• Today I went shopping and after I was done and paid for my stuff, I couldn't find my keys. Again. I dumped out my purse again. I checked all my pockets. They weren't there. I asked at the desk to see if they turned in by anyone. The manager was helping me look for them. No where. He said I should leave my information at the front desk and they would contact me if anyone found them. Then I realized that maybe I left them at the register when I paid and I went back to check. They weren't there. But someone had found them outside and turned them in.

So how much of a moron am I? I blame chemo brain, fibro fog, and anything else I can think of in my tiny brain. 

I honestly believe that my ailments and all my medications cause memory and brain problems. Never mind aging, even though I am still 36. So if you want to be brainless, get ailments... They make life so much fun.

Chemo brain starts with diagnosis

There has been a fair amount of research on chemobrain in recent years - yes its real. but new research shows that it starts at cancer diagnosis with the resulting PTSD. So basically you don't have to have chemo to have chemo brain. You just have to have the diagnosis.

So chemo brain or cognitive function disorder comes from stress. I definitely understand this. The new research did explore other possibilities in that cancer could impact certain thingies in the brain. But I'm sticking with stress.

You know if you are in a stressful time period or situation, your brain starts to run a mile a minute and you can't remember anything. I think we all remember where we were when we heard those words 'you have cancer', but then do we remember much else from the next few moments? And then we all start to panic on some level 'am I going to die?'. Then our brains dissolve further.

The ensuing days, weeks and months are full of stress as we try to control our panic and figure out how to handle our treatment as we make decisions - surgery, chemo, and more. Our brains keep melting. Then the chemo drugs start to have an impact on more brain cells. By the end of it all, we feel we can't remember anything.

I think for me my brain further went to mush with the onset of fibro fog, but I can't remember.

Call me a moron

Let's start at the beginning. I forgot to blog yesterday. Completely forgot. It slipped my mind completely. But I do have an excuse, we had a small college reunion here yesterday afternoon and I was busy getting ready.

I also am a moron because I lost one of my favorite earrings yesterday at the party. I am still scouring the house  as we speak and hope it will turn up but not very optimistic because it is a small stud earring, but relatively valuable and sentimental as well because my husband gave me the pair.

Next on the list on Friday morning I thought I had a refill on my Tramadol (breakthrough pain medication) but when I went to refill it, the pharmacy told me that because the law changed (and I was supposed to know that how?), it can no longer be automatically refilled because it is one of those kind of medications (meaning it has 'street value' - all good drugs have street value. So I called my pain management doctor and begged to have a refill called in on Friday so I didn't run out over the weekend - this would have made me very cranky for said party.

Usually on Saturday afternoons, my big project is to refill our pill bottles and make sure we are both set for the week. I didn't do that yesterday because of the party. This morning I got up and my first task was to fill our pill boxes. This is when I realized that I don't have enough Lyrica to make it through the week. In fact I have enough for 2.5 days. This is a problem. Lyrica withdrawal is nasty. I did it once before and it was two weeks of hell.

I get Lyrica through mail order because of the cost. It is expensive. Normally it takes at least a week to get a mail order refill. Crap. And its Sunday. So here is my plan:

Step 1 - switch from 2 tablets daily to one a day. That will get me to Friday.
Step 2 - called my pain management doctor again and made another begging phone call to ask for two months supply to mail order AND a five or ten day supply to my local pharmacy for an expensive bandaid to carry me over.

But I won't have an answer until tomorrow to see if I can keep my fibromyalgia under control and avoid Lyrica withdrawal...

I NEVER mess up my meds. I always have a week's cushion built in so I don't run into these problems. 

Yes you can call me a moron for all of this. But I can also blame chemo brain, fibro fog and what ever else I have.

And if you happen to find the earring I lost yesterday, please feel free to let me know.

Unemployment after chemotherapy

In May 2007, two weeks prior to my breast cancer diagnosis, I was laid off from my full time job. That is the last full time job I have worked. I was a rocket scientist and decided I could job hunt between surgeries and while going through chemo. I ended up returning to a part time job I had held before - lucky me, they had an opening.

Now it turns out I am not alone. New research (because we always need new research) shows that women who undergo chemotherapy for breast cancer are much more likely to become unemployed. (They didn't tell us about that little factoid when we were making treatment decisions.)

"Dr. Reshma Jagsi of the University of Michigan Health System and her colleagues studied 2,290 women in the Los Angeles and Detroit areas diagnosed with breast cancer between 2005 and 2007. They spoke with more than 1,500 of them four years later.

About 1,000 of the women were under 65 and interviewed both times, and of them, 76 percent had paid jobs before they were diagnosed.

The women who got chemo were less likely to still be working four years later, they reported in the journal Cancer. The researchers found that 38 percent of the women who got chemo were jobless four years later, versus 27 percent of the women who skipped chemo..."

"The findings don’t surprise breast cancer experts. “For the vast majority of patients, side effects are manageable and they can improve after, but some patients don’t feel fully functional for the long term,” said Dr. Jennifer Litton, a breast oncologist at MD Anderson Cancer Center in Houston."

In my case, I worked two part time jobs for a total of about 30 hours/week for a few years after chemo and radiation ended. Since my rheumatoid and fibromyalgia diagnoses I have cut back to one part time job for 15-18 hours/week. Sometimes that is even difficult.

Even with out RA and fibromyalgia, I am not sure I would be able to do my previous jobs again. As marketing director for a medium sized non profit, I was multi-tasking, putting out fires, and jumping through hoops as I hands on managed and over saw an on-and offline marketing plan. My brain is fried. I get tired. My chemobrain kicks in and I have no memory of what I did 10 minutes ago. I don't trust myself to do as much as I used to.

Now I do marketing for a small family owned business. When I took the job, we discussed the fact that it was clearly a step back for me career wise. I told them my life had changed in that I had gotten married and was looking for a job where I wasn't traveling, wasn't managing a bunch of people, and could go to work and go home. That has become even more real. 

Now I leave myself notes all over the place on what needs to be done because there is no way I could remember it all. I have flexibility to go to doctor appointments and for the days when I am too tired. I can manage my schedule around my health issues. And I don't have to worry that I might overextend myself because I can handle my little job.

This new research shows me that I am not alone and there are many other women out there who don't work or work in lesser jobs because of chemotherapy.

I still think there is something else...

I know I have chemo brain. I had chemo and my brain has gaps and I cant remember things. I know I have fibro fog. I have fibromyalgia and now I can't remember names or words for things.

But now I know I also have 'cognitive decline from breast cancer hormone treatment' due to my Femara treatment.

""Decline in cognitive function is common in patients receiving adjuvant therapy for early-stage breast cancer," concluded Dr. Rugo, director of the Breast Oncology Clinical Trials Program at the University of California, San Francisco. "Ongoing hormone therapy appears to be a risk factor for worse cognitive function."

I'm doomed. I can't remember anything these days.

But I still think there is something else that I can't remember....

My story is that I have chemo brain, fibro fog and something else I don't remember....

Now I might be able to also claim Tamoxifen fog. I was on tamoxifen for two years so now I have something else. But I think there is still something else. I just can't remember.

Further proof of chemo brain

A study (because we needed another study to keep all those researchers busy) shows that an EEG can detect chemo brain in women undergoing chemotherapy for breast cancer. So will people now really start to believe chemo brain, or cognitive deprivation, exists? For some reason, this reminds me of when doctors told women their cramps were imaginary.

If I think about the research and clinical trials put into development of chemotherapy and other drugs, when was chemobrain determined to be a 'non-issue'? It is a true side effect of chemotherapy for patients. If its temporary its one thing but for some women it really never goes away. So why was its impact determined not to be of importance?

So pretend if it it was not impact on your brain but on your heart or lungs which could be measured medically through tests quite easily and left the patient with a permanent impairment which interfered with their daily living and ability to hold a job. Would it be considered then to be a caution or warning when prescribing?

Chemotherapy drug doses are estimated based on patient weight and a few other factors so there is not really an exact dose to give everyone. It appears to me (and I am not a doctor) that the patient's first dose is a guess based on their weight and a few other factors, and then based on their reactions to it, they alter the dose for future rounds. Would lower doses still be effective but with fewer side effects such as chemo brain? I think we already know the answer - more research is needed.

The best of intentions

I had the best of intentions on writing a blog post this morning. But then I got side tracked. I watered the flowers. I fed the cat (again). I was going to write about the negative comment I got on yesterday's post. Then I decided to go for my fasting blood test before acupuncture this morning. Then I realized I forgot. Chemo brain gets the blame here.

So have a lovely summer day wherever you are and I'll be more profound tomorrow.

Allow me a tiny bit of gloating here

I've been saying it all along and now I have proof. I claim chemo brain and plan on claiming it for the rest of my life. Now there is a study (because of course we needed another study) that chemo brain can last for 20 years. Of course they are saying well it could be that earlier chemotherapy regimens caused more damage than newer ones and that maybe hormonal treatments might also contribute to chemobrain. But I don't care. I get to gloat a tiny bit.

But chemo brain is nothing to laugh about. Not remembering words, using the wrong words, and more are little aggravations but when they happen all the time, they can interfere with your quality of life.

In case you thought I was making it up

A new medical study (which of course we needed) has shown that cognitive issues exist after breast cancer treatment. Basically this means my chemo brain is real. Go watch the video here. Some major technological advance (or my chemo brain) has prevented me from embedding it.

It is nice to know its not all in my head that others cope with it as well. I like it when a medical study agrees with my thinking instead of confusing me.

An ounce of prevention beats a pound of cure

We get our flu shots and other lovely injections to prevent 'bad' things. Now 'they' (as in the big mysterious them a/k/a big brother) tell us that Tamoxifen and aromatase inhibitors can help prevent breast cancer in women who are high risk. And if you take a pill for five years you get another 15 years, 20 years total, of 50% or more risk reduction. Now that is pretty good news I'll say. If I could have prevented my breast cancer, I would have. But I was basically at a normal risk level so I wasn't a candidate

But the article adds that there are risks of side effects from the medications. Tamoxifen can cause uterine cancer or blood clots. Aromatase inhibitors can cause hot flashes, bone loss, muscle cramps and other little fun things. Side effects are side effects. I do not think they are a reason to stay away from a medication. First of all not every one gets them. If they did, the drugs would be off the market. If you have to deal with hot flashes for five years but then significantly reduce your risk of cancer for another 15, I'll take hot flashes over cancer any day. If one drug does not work for you, there are often substitutes that can be made. And if you are on the medications you will be well monitored.

My take on drugs that are recommended to me is that I will try them and if I can't cope with the side effects or don't like how I feel, I go back to my doctor and ask for a dose adjustment or a substitute medication. A medication is taken for a purpose and which is the lesser of two evils - the side effects or the original ailment?

A pound of cure for breast cancer often includes chemotherapy as well as radiation and surgery. Surgery leaves scars. Radiation can leave skin and other issues. Chemotherapy can leave blood issues, and chemo brain. Now that it has been documented by Fox News, we can confirm that chemotherapy causes chemo brain. So not only do you get to be on the cancer roller coaster for life but you lose some of your marbles, a/k/a brain cells, during treatment. But my chemo brain has created an endless supply of humor for my husband as he laughs at my latest brain freezes, and I'm not even a politician.

I did the exercise, eat right, take care of myself life style, but apparently it wasn't enough. I want a magic pill that prevents everything - or are those called vitamins?

So where do I fit in?

I whine about chemo brain and lack of brain cells overall. Apparently now I am doomed. After age 50, your brain starts to shrink. So where does that leave me?

There are things you can do to reduce risk of memory loss.

- Dance - its social and exercise. It makes you interact with people and you get physically fit.
- Exercise - it grows your brain. Who knew you could reduce your waistline and increase your brain size simultaneously. This takes multi-tasking to a new level.
- Start young - I've been fairly athletic my whole life and my mother used to feed us lots of vegetables and tofu. We still eat lots of vegetables to my husband's dismay.
- Eat right - I usually do. 3 meals a day, minimal snacking, lots of home made, very little prepackaged.

Well I don't dance... I think I no longer have the coordination. But I do exercise, I have been fairly athletic my who life. I don't eat prepared food. I think I did got to a fast food restaurant this year while traveling but think we ate semi healthily.

But my problem is I am starting with lack of brain cells already. So where do I fit in if I am starting from last place? Examples of my lack of brain cells in recent days are:

- I spent two days looking for the damn spray bottle so I could work on blocking some knitting. I couldn't find it ANYWHERE. I looked all over the house. I asked my husband. I couldn't find it. I gave up and bought a new one on the way home from work last night. 15 minutes after I got home I found it on the kitchen counter, tucked into the corner right in front of me.

- I got to the gym the other day with a pair of sneakers to work out in. I had two rights, from different pairs.

- I ordered something online recently. It showed up yesterday. I stood there and stared at the package. What did I order? I couldn't remember. Was it a mail bomb? I had no idea. Then I opened it and realized I had ordered it.

Need more examples? I can go on. These are daily ocurences.Feel free to ask my husband. He finds my lack of brain cells extremely humorous.

I don't recall

I don't remember. I must have forgotten. Can you tell me again? I'm sorry, I don't recall that.

Yesterday while at work, I realized that there was yet another thing I couldn't recall. Or to put it bluntly, something else I forgot. I then started thinking about how much I couldn't remember. I realized that there was a lot I couldn't remember - yes I could remember that I couldn't remember.

My desk is a pile of post it notes of things to do. Every day when I get to work, I create a new to do list so I remember what I meant to do. Also I do get a tiny bit of satisfaction in checking completed items off the list. Then I started to think of reasons that I couldn't remember things.

• I am getting older. Its none of your business how old I am but my point is we aren't getting younger, we are getting older. Old people are allowed to forget things. I am not old. I am getting older. There is a difference. But it causes forgetfulness.
• I have chemo brain. I have been using that excuse for a while. Maybe its even true.
• Menopause causes memory lapses. I believe that it is considered to cause forgetfulness. I have chemopause or chemotherapy induced menopause which is the same thing. Or maybe twice as bad.
• I take multiple prescriptions daily. Pain meds can cause forgetfulness. 
• Dieting causes forgetfulness.
• Volunteer work causes forgetfulness.
• Cooking shows on TV cause forgetfulness.
• Daily crossword puzzles cause forgetfulness.
• Too much time on Facebook causes forgetfulness.
• Going to the gym causes forgetfulness
• Red wine causes forgetfulness
• Ice cream causes forgetfulness.
• An unfulfilled passion for fried clams causes forgetfulness.
• A need to go to the beach year round causes forgetfulness.
• Singing along to the radio in the car while no one is around  causes forgetfulness.
• Too many doctor appointments causes forgetfulness.
• Gardening causes forgetfulness. (Damn I have to plant the plants I bought last weekend!)
• Knitting and crocheting cause forgetfulness.
• Bad backs cause forgetfulness.
• Cancer causes forgetfulness.
• Being married causes forgetfulness.
• Owning a pet causes forgetfulness.

Or you can just say I am a space shot who goes through a lot of post-its. Maybe I should buy stock in Post-Its.

Lack of brain

So I claim chemo brain regularly. My husband agrees. Sometimes he even suggests I might possibly be a space shot. Today's newspaper has an article about memory loss as affecting older adults (not me) and what is normal and what is not:

What’s normal and what’s not
A memory problem is serious if it affects your daily life.

- Sometimes forgetting names or not being able to recall a word.
- Memory lapses that include walking into a room to retrieve something and then blanking on what that was.
- Forgetting where you put the keys to your car. (Forgetting how to use the keys is not normal.)

NOT NORMAL
- Forgetting how to do things you’ve done many times before, such as cooking a dessert you’ve made for years.
- Repeating phrases or stories in the same conversation.
- Unusual trouble making choices or handling money.
- Permanently forgetting the name of a close friend or relative.
- Frequently misplacing something such as a purse and putting it in inappropriate places, such as the fridge.

SOURCES: American Academy of Family Physicians, US Food and Drug Administration, Dr. Eliza Shulman

I asked my husband to read this list. He says he believes I am in the normal range. But let me tell you my side:

- Last weekend we replaced the screen door on our house and switched it so it opens from the right, not left. I still try to open it from the wrong side.

- I open the refrigerator when I was going to put something in the microwave.

- I routinely cook on an off burner.

- I can only find my car in parking lots because I can make it beep from a distance.

- Every day I have to go look at what I blogged on yesterday before I can post today.

So as you can see my brain is a sieve. But I am normal. So I can feel better. But still I claim chemo brain so the expectations are not set too high.

Chemo brain or cancer brain?

So maybe it wasn't chemo that made me a space shot... Maybe it was having cancer itself that did it. So if I went through it twice, I am at two levels of spaceshotness. I asked my husband to confirm this and he said 'for a spaceshot yes, this would make sense'.

The real term is cognitive impairment. As discussed previously, they are several arguments for or against this. Is it just what happens to your brain while aging? Is it a symptom of PSTD? Is it a side effect of menopause for women? The answers may never be known because they probably will never be able to pin it down

But I digress. We are almost halfway through pinktober, well just over 1/3 of the way. I see the trend this year as to people questioning awareness vs. research. I have seen glimpses for this, not just with Dr. Love's interview. I have seen more pink objects than I care to count.

They do this on purpose

The 'They' are refer to are those mysterious people who create the conspiracy theories (and steal lost socks from dryers) around the world. Its all a plan to drive us breast cancer people crazy, kicking and screaming as our brains overload from contradictory information yet again.

So tell me are vitamins and calcium good or bad in the role of lowering risk of breast cancer. Well they just don't know. Read this article which says that calcium lowers risk of breast cancer AND it contradicts a 2008 study that said the opposite. I even blogged about this back in November 2008.

So the burning question is not resolved and 'they' are stuck in a never ending vicious cycle of 'yes they are good' vs. 'no they aren't'. I think they do a study get one set of results and then run another study for confirmation which says they aren't so they have to do another study... See, we will never get a concrete answer here. We can just keep the vitamin manufacturers (are they secretly funding these studies?) happy by buying their products or choosing to eat a really balanced diet and get all that we need naturally?

I don't know. I am confused. I have chemo brain. I can barely remember to take my vitamins with my chemo brain, never mind keep up with these contradictory studies. My brain hurts. But I will attempt to remember my vitamins today.

Long term chemo effects

For a quick bit of humor, watch this first...
See, it pays to be polite. Don't honk at old people.

So I was surfing the internet (wasting time online again) and found this one person asked a question if chemo could have caused her hands to shake. So having an inquiring mind, I had to read the whole damn thing. I had forgotten a lot of these - conveniently blocked them out of mind. Perhaps this is due to my cognitive dysfunction (a/k/a chemo brain). So in conclusion, having chemo brain can be helpful. You have a reason for blocking out the bad parts of life.

So today is another rainy yucky day. Yesterday I was bad. I didn't go for a walk (gasp!) nor did I do all my exercises last evening (double gasp!) nor did I take all my vitamins (triple gasp!) nor did I eat a salad (quadruple gasp!). But I worked all day (and got a manicure) and it was rainy so I didn't have time to go for a walk or to the gym. I was lazy and didn't feel like doing all my exercises. And I have chemo brain so I forgot the rest of my vitamins last night.

This morning I am going for a walk (the rain has stopped but its cold and yucky out) and then I think I have a volunteer meeting. Tonight we are going out. Yes really. We are going to a fund raising dinner dance for the nonprofit I now work for. It should be fun. It means getting out of our rut.

Having no memory

Chemo brain means having no memory - short term or long term. It is now my excuse for forgetting just about anything. Sorry if you think I over use it but I am going to use it.
However now my phone has lots its memory. The sim card died. This means every single phone number that was programmed in is now gone! I have to find them all again and start programming. WHAT A PAIN!!! But it does give me something to do between job hunting, being sick, working, and going to the gym.

Speaking of memory, yesterday was a rainy/snowy/yucky day. I decided not to go outside for a walk (because that would be a really bad idea since I have a cold). Instead, I decided to take my cold germs to the gym (so I could share them). However I have no brain so I got there with out my sneakers. I ended up riding a stationary bikes, pedaling in my socks. I looked at my sneakers before I went out the door and just forgot to pick them up.

Sharing is an important thing to do. I have now also shared my cold germs with my husband. This makes him crabby. Perhaps he will just go back to bed or something. I actually do have a busy day. I need to do the work I didn't do yesterday as well as go to the gym and go to work. I also hope to fit in watching Top Chef. The new episode was on last night and is on again today at 11. I hope to watch it then.

Otherwise another normal boring day. My back hurts. My cold is still here. So exciting.

Heat and ice

Here in Boston, it is winter. It is cold. Today is especially yucky with a nice freezing rain on top of an inch of new snow creating a lovely glaze over everything (very conducive to staying inside). Yesterday I was told by some friends I should try to put ice on my back to help with the pain when it is bad. I'm sorry but ice packs do not belong on people in Boston in the winter. If you need ice, there is plenty outside. I prefer hot packs

Last night I opted to go with the hot pad route again. We have a buckwheat filled pillow that we put in the microwave and it stays nice and warm. Well, smart little chemo brained me listened to my husband and put it in for four minutes. Apparently this was too long as it was too hot to touch and smelled like cooked buckwheat (not the optimal result here). So I let it sit out and cool off for about 15 minutes before trying it. It was nice and warm and then instantly moved to the too hot category. So I moved it and found that it had made a very hot place on my pillow as well which was too hot to lean on. Very complicated this hot cold business. Which one to use, how not to be too cold or too hot.

In the meantime, in addition to back pain, I have a cold. Yes, the basic all American common cold (that they don't have a cure for just like cancer). Okay, I am whining. I am allowed to whine. Here's my list of reasons for whining today: my back hurts. I have a cold. The cat insists on helping me type by sitting on my lap. There is an ice storm going on making it very slippery out. I can probably add more but I think that's enough for this early in the day (and I didn't even include the cancer business or post surgery abdominal pains).

Anyway, yesterday I went to the gym and worked from home. Then a friend had an errand in the neighborhood so I met her for lunch before going to my support group. Rather productive. Not necessarily restful. My husband thinks I should stay home all day so I get better. Well, that is boring. It might make me whinier. I was going to meet a friend for coffee today but due to the lovely weather conditions perhaps we will reschedule for tomorrow.