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Saturday, September 17, 2011

Positive Improvements

It really pays to have rock awesome doctors.

Let me backtrack a little here....

Earlier this summer, I had to have a regular check up with my surgeon.  The checkup went fine, but that day had been a particularly bad, emotional, depressed day for me.  I was totally out of sorts.  Insanely so.

In the office, my blood pressure was sky high, higher than it has ever, ever been.  Scary high.  Crazy high.  I never have problems with high blood pressure, so that was odd.  I'd totally lost it on The Eldest on the drive up to the appointment over something totally stupid.  I was weepy.  It was crazy.

Near the end of my appointment on this particularly, spectacularly bad day, I was crying about how horribly I was functioning.  How confused I always was.  How fuzzy my brain was.  How I could hardly read.

Dr. The Cutter immediately knew what I needed.  I needed to go see her friend, a psychologist, who treats people with chemo brain.  I really think she thought I was losing it, because--being the rock awesome doctor she is--she called him right there, left him a message when he didn't answer, and called to follow up with me a few times in the days following.

I've not had a day that bad since (maybe not before, either), and I tracked it down to an increase in my Ambien dosage.  Therefore, I should never have that problem again, but it sure was scary.

Since I didn't feel so fragile once I stopped taking Ambien, I put off calling the chemo brain doctor as I was thinking of him.  Yet, eventually, I did get around to it.  And I am so happy that I did.  It has changed my life more than I could have imagined, and I foresee more changes in the future.

For starters, when I finally did get around to calling him, he remembered who I was--and what Doctor the Cutter had said about my mental state on the day she last saw me.  He immediately agreed to set up an appointment with me and deal directly with my insurance company because one reason I hadn't called sooner was the "deer in the headlights" position I find myself in whenever I have to do such things as call insurance company or sort out such details.

So, one day in July, I met the Magic Man of Maumee as I've come to think of him.  We had a chat.  I detailed all of my chemo brain problems and frustrations, how my life was falling apart. 

It's hard to even put it into words....for starters, I was having incredibly hard times finding words, most notably nouns, even common every day words.

Here's an example:  my sons' names.  Sure, like everyone, I tend to call child A by child B's name.  I've always done that.  But for the last year or so, I can be staring right at a child and not be able to retrieve the name.  I'd just stare blankly.  There were other, more disturbing things. Like not being able to remember what I was doing while I was doing it.  Not being able to follow along in meetings.  Not being able to read a student essay without losing track of what I was doing.  Forgetting in the middle of writing a comment on said student's essay what it was I was commenting upon.  Being nearly totally incapable of basic math.  Having a hard time reading fiction.  A general lack of critical thinking and analytical ability.  Much worse spelling, which has never been a strong suite for me, than normal.

And then there was my inability to remember what I needed to do, to carry through with what I should do, to complete what I started, to start.  I'd find myself frozen with anxiety, unable to start things:  housework, grading, planning, phone calls.

I was perseverating on certain topics, to the point that I was losing sleep.
I was depressed.

I could barely do my job.  Teaching was hugely, hugely stressful for me.  I'd lost my pizzazz.  I could barely do what I needed to do.  I was constantly forgetting basics.  For instance, I had to set an alarm on my phone to remind myself to take attendance!  I wouldn't get prep work done in a timely manner.  I felt as if I weren't making sense when I'd talk to my students individually.

I couldn't grocery shop and then figure out what meals to prepare.  Food regularly rotted in the fridge because I'd forget I'd made it in the case of left overs, or I'd forget to repackage and freeze it in the case of buying large quantities of chicken quarters several times, or I'd forget to prepare what I'd bought.

We have eaten so much pizza in the last year......gag.

I couldn't retell simple movies that I'd just seen.  Heck, I could hardly watch a movie and follow along.

I'd get confused really easily.  I couldn't remember strings of numbers, even saying them out loud.

In general, I felt really stupid and incapable and everything was so damn hard.  So, so, so hard.  My quality of life was certainly diminished.

So the Magic Man of Maumee and I talked.  I explained.  I described.  I detailed.  The Magic Man explained what science and research has shown about the brains of those who have such complaints after chemo.  It's not everyone who has such changes, although women--especially--who are required to multi-task tend to find the changes most disturbing.  Women in a certain age range tend to find them more obvious and to bounce back less quickly than other women.  I tend to fall into all of the "risk" categories, including one of the biggest for significant negative change:  having ADHD.

For years, I'd suspected that I had ADHD.  I started wondering when my one son was diagnosed with pretty extreme ADHD.  I then had a student who did a fairly extensive research essay about girls with ADHD, and, in doing her research, she got tested and was diagnosed, began treatment, and her life improved greatly.

Yet, I couldn't get my life together enough to do anything about my suspicions...which is very typical of a person with ADHD.

So, the Magic Man gave me some tests.  I aced 'em.  He had my husband and one other person who would rather go nameless fill out some questionnaires.  I "aced" those, too.  If there is such a thing as "off the charts" in the area of non-attentive ADHD, it would be me.

The Magic Man's assumption is that I've always had ADHD but to a lesser degree, and that I'd been more or less able to cope, until doing two protocols of chemo aged me by 20 years and shrank my frontal cortex (I think that's what he said).

Anyway, it all made sense when he was explaining it.

He then gave me a bunch of other tests to rule out anxiety and depression and mood disorders and other, more serious, problems.  Indeed, they were ruled out for the most part.  At least the biggie, mood disorder, was ruled out.  Many people with ADHD also exhibit signs of anxiety and depression, as do cancer there were some blips on those tests, but nothing too significant.

After meeting three or four times, the Magic Man made a recommendation for some medication, which I started taking in August, and I've continued to see him for talk work and ADHD coaching.

The change has been phenomenal.  Life certainly isn't perfect, but I'm able to participate again.  I'm still overwhelmed by things with a lot of details.  But for the first time in a long time, I feel engaged in the world.  I'm not just going through actions in a daze. 

I'm as on top of things as I've ever been since having children, I think.  For example, I graded four sets of essays in three days last week without even noticing that I was doing it.  Reading and commenting on them was easy, and it wasn't at the last minute.  I *see* the flow of pedagogy in my classes for the first time in two years.  I can plan things and execute them.  I can be engaged in meetings.  I feel much more alert (and don't go thinking it's because I'm taking speed or something for the adhd, because I'm taking a non-stimulant med). 

Best is that for the first time in my LIFE, I can see how to work with my limitations and make life work.  A huge part of that is the "coaching" the Magic Man is doing with me, helping me to think differently about time, helping me to work with instead of against my neurology.  In a lot of ways, life is becoming the "easy" way I always saw it for so many others.

And this all reminds me of the first day my one son took his first pill for his ADHD--and trust me, I was loathe to the core to "resort" to meds with him--and he came to me and said, "Does everyone see the world so clearly?  Why didn't you give me that sooner?"

I can still tell that my brain isn't what it once was.  I still struggle for words.  Writing is hard.  Organizing my thoughts is hard.  I certainly don't have the IQ I once had.  I've been with my students for 4 weeks now and I'm still struggling to recognize them all and remember their names, but I'm way, way better off than I was at this point last year.

I still struggle to read, but I'm not struggling with student essays.  And I am able to finish novels now.  I can follow movies better.  I'm sleeping better.  I'm not fixating on negative thoughts so much.  I'm much better able to organize the family.

Meals and shopping are still a struggle, and I'll be working on that area in October.  Meanwhile, I've to a flow to my days, a flow that is intentional.  I don't feel so overwhelmed by getting out of bed in the morning.  I've been able to add activities to my schedule.

All in all, it's been a good thing, and the Magic Man thinks that at some point, I'll be able to stop taking the med.  We'll discuss that in 12 months.  I think I'll also be doing some brain training to try to get back some of the intelligence that I've lost.

Two days ago, I saw my onco, and we were discussing this.  She clearly believes in chemo brain and the havoc it wreaks in our lives.  She was very happy to learn that my quality of life has improved.  And later that night, she called me to let me know that another woman had been in to see her with similar complaints, would I call this woman and give her the Magic Man's info?  Duh.  Of course.

Wednesday, September 7, 2011

Wanna be a guest blogger in October? Leave a comment here!

Hey all,

If you'd like to be a guest blogger here in October, which by the way is Breast Cancer Awareness month, leave a comment here (not on facebook) so I can keep track....

You don't have to blog about breast cancer.  You don't have to have or have had breast cancer.  I'd kind of like to keep the focus cancery and maybe tangentially related to life with cancer or observing cancer or being a caregiver or whatever.....but really it's up to you.  Run it by me and I'm more than likely to give it the thumbs up.

Some ideas:
Not having breast cancer
Having another cancer that is over shadowed by the emphasis on bc
Being a caregiver
Living with a chronic illness
Having an invisible illness
being young, old, minority, poor, etc....and cancer
living in the shadow of cancer....
the importance of support

I will be the writer, not me.

Let me know....I have lots of people in mind, but I'd like you to step forward on your own:)

Monday, September 5, 2011

How many weeks? Where do you like it? What color? Memes for a cause

DISCLAIMER:  I apologize for letting this blog lie dormant lately.  I owe a HUGE apology for not handling my time better and keeping up with it.  Also, tonight's topic is one I've been dwelling on for a few days, but just now sat down to work on.  This will be neither well organized nor clear, I'm guessing.  I'm trying to cram in a little bit of TV watching at the same time before the start of a particularly hectic week during a particularly hectic semester.


Social networking has given rise to the phenomenon of various memes of all sorts.  However, one particular type of internet meme is the "awareness meme." The most basic of these are found on facebook and take the form of "25 Things" or whatever.  If you are on Facebook, you've seen these.  "25 things I've never told anyone" or "Put your ipod on shuffle" or whatever.  Another common one is the "cause" meme.  This type always ends with "if you care about cause X, post this to your status....only a certain percentage of you will" (implying that if one doesn't spam their friends with statistics about child abuse or leukemia or fire fighters or nurses or whatever, one doesn't care.  Again, whatever.

Some of the oddest memes in the category of the cause meme are the "keep this secret from men" memes.   Two years ago, this meme took the shape of an oblique reference to bra color, the following year, it was a weird reference to where women hang their purses--masquerading as a sex reference:  "I like it on the kitchen counter" or "I like it under the table" or "I like it in the closet."  This year, it's something really, really weird:  a misleading statement indicating a woman is pregnant and craving a specific candy.  What all of these odd memes have in common is that they are, in theory--and theory only--, intended to raise awareness of breast cancer.

Even as I type this, it makes no sense.

I know no one who spreads these intends to be anything but helpful and supportive.  So I really feel kind of bad for saying this, and I sincerely hope I hurt no one's feelings.

But dang, these things trivialize breast cancer.

And they don't raise awareness.  Remember, they are secret.  They are coded.   Only people in the know can participate.  It's just stupid.

1)  Keeping this a secret from men serves what purpose?  Men can get breast cancer, too.  These poor men are often overlooked.  What an awkward cancer for a man.  How does a man say, "I have breast cancer" to his buddies?  Where does a man go for support?  Also, men in the lives of women with breast cancer are deeply affected by breast cancer.  The lives of my husband and my three sons will never, ever be the same since my diagnosis.  More than worrying about my own life, I've worried about theirs, especially my sons'.  Cancer has affected their grades, their personalities, their sense of security and fairness, and their futures.  Trust me, they are NOT better off for the experience.  None of us are.

2)  When it comes to the bra color meme, what?  Because of breast cancer, I'll never have to wear a bra again.  Seriously.  Even with reconstruction, my breasts are so unnatural that a bra is redundant.  Oh, but that doesn't matter because thanks to radiation, the tissue in my chest is so tight that it still feels like I have the band of a bra around my chest.  I'm not sure that I'd even be capable of wearing a bra.  Thanks to radiation and/or surgery, I seem to have some nerve damage in my left arm, resulting in carpel tunnel and what is apparently untreatable tendonitis in my elbow.  Add to that a minor case of lymphedema in that arm, and a bra strap on my shoulder would probably cause tingling, numbness, and maybe more swelling. 

I'm not alone.  Some breast cancer endurers don't need bras because they don't have breasts.  Others need special bras to hold their prosthetic breasts.  Those don't tend to come in sexy colors.

The bra meme was trivializing.  Saddening.

3)  The purse meme, alluding to where one likes to have sex, is an odd one.  Breast cancer, although the disease contains the word "breast," is not sexy.  A mastectomy is not sexy.  It's an amputation.  Some of use even have "ghost pains" or sensations where our breasts should be.  I still feel the nerves that used to lead to my nipples--tee hee she said nipples--used to be.  Only I don't have nipples.  I can't even feel sensation on the front of my breasts.  "Feel your boobies!"  "Save the ta-tas!"  "Save second base!"  Sensationalizing the sexiness of breasts, all of it, is misleading as all hell.  Being nauseous, bald, bloated,  and in pain does nothing to make a woman feel sexy.  Lots of women are suddenly thrust into menopause, regardless of their age, when they start chemo.  Again, not sexy.  And what about those poor men who get breast cancer?  How sexy can they feel?  And then there is the insanely huge number of strangers who get to look at, feel, discuss, take pictures of, and mutilate the breast cancer endureres breasts?  Not sexy, especially when those ever so attractive hospital gowns are involved, doubly so when in a hospital gown under fluorescent lights.

A meme supposedly intended to raise awareness but really makes it into a sexy little game is insulting.  Totally.

4)  This year's "I'm X number of weeks and craving Y" meme is probably the worst.  For starters, who ever thought of it is not very forward thinking.  Slap that statement up on facebook and suddenly people start congratulating you...and then feeling like idiots when you say, "Oh, I'm not pregnant!"  How many people out there thought that they were finally going to be grandparents?  That a true miracle had occufred, only to find out it's some odd joke with a purpose kind of thing?  What about the husbands reading their wives' statuses thinking, "Oh. My. God!  I don't want another kid!  I thought we'd taken care of that!!!! Now what?!?"

Worse, though, are the people who have been struggling with infertility who have to see these statuses.  Their struggle turned into a joke of sorts.  I can't even imagine what this meme has done to people with infertility.

But in the realm of breast cancer, it's doubly insulting and insensitive.

Chemo has a way of making people infertile.  Some regain their fertility.  Others never do.

Many women opt to undergo oopherectomies--having their ovaries removed--to prevent more cancer.  Some who are BRCA positive (gene positive) have much higher odds of passing the gene on to their future children, making pregnancy a real double edged sword.  Those same women have a much higher incidence of other "female" cancers, cancers which lead to--you guessed it--infertility.

Estrogen, a necessary female hormone for "cycling", also increases one's risk of breast cancer.  So, just being a woman who is fertile is a risk.

So this meme is simply thoughtless.

5)  But the worst of all of this is that memes are not going to raise awareness.  I'm not even sure what it means "to raise awareness."  I've written about awareness in the past, both here as well as here.

What I want people to become aware of is that breast cancer isn't fun.  It isn't pretty.  It's not feminine.  It's not sexy.  Most of us don't just get on with our lives.  We are irrevocably changed.  We are forced to make the best of it, for the most part.  What other option is there?  It doesn't "make us better people."  We were pretty darn good people before this.  Nothing we did caused this, and there's really very little people can do to prevent it.  Well, having breast buds removed  at birth would be a good preventative.  Beyond that, there's not much that an individual can do.  Healthy people get breast cancer.  Thin people get breast cancer.  Vegetarians and happy people get breast cancer.  Old people and young people get breast cancer.  If you have breast tissue, you are at risk.

No one wants to think that way, but that's what people need to be aware of.

And that's what's been on my mind lately.

Now, before I head off to bed so that I can get up at some unholy hour to go see my Occupational Therapist for more wasted time trying to fix my tendonitis--which is not improving--and over which I am very depressed, I'll give a brief update of what's going on here at the homestead:

School is back in session.  The Eldest has left to participate in for his first semester of college.  I've talked to him twice since he left.  He's having fun. He also has officially moved out of the house and has an apartment on the other side of town for when he returns.  In other words, he's fledged and left the nest. The Feral Third has moved into  The Eldest's bedroom and has new furniture, new design, and it's all preteen kind of stuff.  The Middle is doing well in school this year and is actively working with Organizing for America as an intern and is heavily involved in helping to defeat HB 194 and SB 5 as well as helping a friend of ours who is running for city council.  He got to meet President Obama in June, and I think he's still walking in air from that experience.

I'm back in the classroom, teaching my typical fall schedule as well as an extra course to fill in for a colleague who has been struggling with cancer and a liver transplant.  The great news is, he's doing fantastically, and for that we are all exceedingly happy.  I'm also finally in a position to do more than just show up and teach.  I'm actually excited to be revamping some of my assignments this semester and also participating in a learning community.

The Mister Mister, who has been out of work for nearly two years has finally found a sustainable job that pays more than his unemployment compensation.  I don't want to talk too much about that because I don't want to jinx it.

The biggest news, though, is that we've opened our home to an 11 year old boy whose family is homeless.  His story isn't really mine to tell here.  However, I will say he's the eldest of 5 children.  His father isn't in the picture at the moment.  His mother is out of work and has nowhere to live.  None of us really have known this child nor his family other than as others who sit on the sidelines at soccer games.  He plays on the same team as The Feral Third.  I figured that we have the capacity, and he's a child in need.  So, he's here during the week for now.  Supposedly, I'll be getting temporary legal custody tomorrow.  My parents gave me the opportunity to expand my horizons by inviting foster kids to live with us when I was young.  It wasn't always easy, but sometimes growth isn't.  I think my brother and I are better for it.  I know my foster sisters were.  I hope that this experience also ends up having a positive net gain for all involved.

It's nice to be back here.  I've missed it.

One final thing:  I'm inviting people to be guest bloggers here in October, "Breast Cancer Awareness" month.  If you'd like to be a guest, let me know!  I look forward to hearing from you:)