The Times They Are A'Changin'

"Come gather 'round people, where ever you roam....."

Yep, that's what it feels like here these days as we approach the Winter Solstice, which for my family is our midwinter holiday.

It's always somewhat of a hassle seeing as my university semester frequently ends less than a week before the solstice.  In fact, there have been years when graduation was as late as the 23rd of December.  Fortunately, I never have to be involved with graduation, so that's a relief.  My official duties regularly end two days prior to graduation.

When the kids were littles, we had a lot more active traditions involving the sun, the science of the sun, the mythology of the sun, and all that jazz.  But by now, our observances have mostly turned into the secularized version of the secular Christmas.  Generally, we have a "feast" on solstice eve or the evening of the longest night.  Typically the food represents dark and light in one way or another (chocolate cake vs. pumpkin pie, beef stew w/sun dried tomatoes, sun flower encrusted bread) and pomegranate (based on the amount of pomegranate seeds my family can consume, the earth will never grow any living thing again and we are all destined to spend eternity in the underworld--which, according to many of our Christian fundamentalist friends is only half wrong).   Then the kids and husband go to bed, and I spend the wee hours of the morning wrapping gifts.  The next morning (when they were young we'd force march them out of bed and force them to watch the sun rise...as soon as they could see it, they'd run off to open gifts...after all they had to see if they had done a good enough job the previous night using noise makers to remind the sun where to return) we'd open gifts.  One year, I even bundled them all into our old station wagon, drove waaaaay out into the country here in desolate, flat NW Ohio, and forced them to watch the sun come up over the flat horizon.  After gifts, we eat a yummy breakfast and spend the day doing nothing but enjoying each other and the new gifts.

In all, this works out well as a practice as that means we get to mostly ignore Christmas Day (we have a tradition of going to the grandmother's house Christmas Eve), so that's another day to just do nothing and be together until time to meander over to the grandmother's house for Christmas Dinner and movies.  I grew up in a tradition of not travelling on Christmas Eve or Day because my father was a minister and my mother found it rough enough (she used to say on us kids, but now as the mother myself I think it was rougher on her) to deal with the stress the services put on my father (one or two Christmas Eve and two Christmas Day, except in the years it fell on a Sunday, in which case there were three services) and unfair to yank us kids away from gifts to travel in the car to visit relatives.  So, once my brother and I started having kids, our families would get together on the first weekend after Christmas that he had custody of his boys.  That worked well.  It's just a day, you know?  It's the family gathering that is important.

Anyway, times are changing.

As I just stated, it's just a day.  At times in the past, we have had to fudge the solstice a little here and there...do our day early or a little late, depending on when my husband could get a day off.  As long as he could be home by sundown on the "eve" we were good and then have the next day off.  In general, when we worked at the big box university, that wasn't a problem.  Then for the last two years, he wasn't working, and that wasn't a problem.

Now he is working again, and working in very traditional retail.  He just started his job this fall, so didn't feel like he should request a day off so soon.  Also, commission is involved and it makes no sense to NOT sell during one of the busiest weeks of the year.  Fortunately this year, he has the first day of winter off.

And so does The Eldest.

Pell Grant, ultimately, when that refund check will come later in the semester).  All he has to do is keep higher than a 3.0 GPA (and if he applies for a book scholarship in time this year that should be taken care of, too).  But I digress...

He is not in a position to ask for time off work to do Solstice with his family.  I get that having worked similar jobs and having been married to a man who has had jobs without paid time off--and depressingly, at this late stage of the game, he's back to that.  The Eldest has Christmas Eve and Christmas Day off--without pay of course.  Initially, I thought that now, with girl friends in the picture, the older two boys would be able to benefit from our Solstice observances.  Get their family obligations out of the way and that opens up time to devote to the girl friend on the more popular holiday.

But with the convoluted work schedules in our lives now...and my medical appointments...well, let's face it, no one else in the world cares that Thursday is our holiday.  The Middle has a baby sitting gig on The First Day of Winter.  I have Occupational Therapy at noon that day.  The Eldest has to work the night before "until close" which can mean whatever he wants it to me...I have no clue.  Plus, he didn't sound too enthusiastic about spending the night here so we could open gifts and sunrise.  And what The Middle said about sunrise is probably illegal to print in several more conservative states.  However, it must be done.  Maybe not sunrise, but morning.  Adult morning, not teen morning.  By 11 am we all have to be dressed and out of the house and sitting nicely in a local dining establishment to have the annual "lunch with the out of town Aunt" which is a favorite...again, compounded by the need this year of the grandmother to have a constant companion due to her frail health and stroke last summer.  Thursday is one day it works, so Thursday it is.  I'll have to leave the lunch early (if I even get to eat) to make it to my appointment.  The Middle will have to fly off to babysit.  So much for a leisurely day chilling as a family.

Now, I'm thinking that maybe we should move our gift opening to Xmas Eve next year to simplify things.  Why Xmas Eve?  We've now entered that phase where sooner rather than later, my boys will partner off.  I'm guessing at least one or more of them will spawn their own offspring (a couple of them talk about it...although those talks tend to include babies left in baskets on my doorstep and twins named Titian and Sophocles and adopting a baby from that Kenyon tribe that produces such fast runners so that one person in the family is athletic...they will mature, I hope), and I really do want to believe that I can be as gracious as my mother was in allowing the spin-off family units to develop their own holiday traditions.  Or maybe we should do Xmas day so until then the boys can be certain to be "free" on the Eve to spend time with girl friends.

I just don't know.  What I do know is I really didn't see this coming last year or I would have made more of an effort to drive home our traditions.

So, this year, the Feral Third, who has very little memory of the traditions that we had when he was little (because there is no way in hell after a certain age the older two were going to go outside and bang noise makers to tell the sun where to come back or engage in dancing to Celtic music in the dark in the house...i tell him he did these things and maybe, just maybe in that two gallon bag of undeveloped film there is evidence), is starting a new tradition.  A weird open house here on The Longest Night.  We've invited friends over to a soup and finger food pot luck and game playing, no electric lights other than decorations.  I can light with candles but from the years of lighting 365 tea lights on Solstice, I know that drives up the heat index.  And we don't have a lot of safe surfaces for candles (I'm more concerned about wax spilling on my floors than burning the house down, to be honest) and there will be young children here, so we will be using batter powered lights for the most part...it's the thought that counts.

Not too long after guests leave, The Eldest should come home from work, although my guess is he'll want to go back to his house, shower, etc. and then have me pick him up (seeing as I was posting to my facebook wall at 4:00 a.m. I'm thinking that his schedule is a little twisted these days).  The Man of the House should get home as guests start to arrive.  Truthfully, the Feral Third was sure no one would want to come.  So we invited a lot of guests.  I think it's going to be quite crowded in our little house (especially since only 3.5 rooms are usable entertainment space (no one can function in my husband's office--I don't know how he functions in there).  The rest of the house is great for family living, but  not so much for entertaining formally.  It's great to hold teens and tweens in the back family room, but other spaces are limited.  Good thing we like people.

Ultimately, what our observances will change to, is yet unknown.  After all, at one point in time, we shopped for family tree ornaments on December 3rd, the anniversary of our first son, born still.  That has since moved to "whenever it gets done" to "OMG, don't we have enough ornaments" to this year we are cramming it in to the last hour the store is open tonight because we can all be there, whether people want to go or not.  Again, this is very important to The Feral Third.  The other boys haven't mentioned it at all.  They.  Will. Do. It. Graciously. Or. Die.

So, times are changing.  This change has taken my by surprise.  It might be the first time I've felt nostalgic for the kids' youths.  I'm more the "wow, this new stage is great and so much nicer than before" kind of mom.  I love my kids' independence.  I was happier than The Eldest, I think, when he moved out and then left for a 9 week trip the next day.  I was one of the only moms with dry eyes as their buses pulled away.

But this, but at this point, it's time to heed the words of the bard:

Come mothers and fathersThroughout the landAnd don't criticizeWhat you can't understandYour sons and your daughtersAre beyond your commandYour old road isRapidly agin'Please get out of the new oneIf you can't lend your handFor the times they are a-changin'.

It's so much better in my memory

A long, long time ago, in a galaxy far, far away, I was a (much) younger mother of two sons with a husband who worked two jobs.  I, also, worked two jobs.  I had the same job I have now, only part time, and I babysat for two other little boys, who were, age-wise, on either side of my then youngest child.

In my memory, those were sweet days.  I remember giving in gracefully and subsisting on "kid" food.  I didn't even bother trying to make adult-like food or meals.  I'd get up at 5:00 a.m. to tidy and sweep before the one child care kid was dropped off at 5:45 because my boys didn't go to sleep until after 11:00 p.m. and their father had left for his third shift job so that they could spend time with him.  I certainly wasn't going to tidy up at midnight, after nursing the toddler down to sleep.

I remember long winter nights, our house chilly because we were trying to spend as little as possible, snuggled in bed with the the boys...on the futon in the office because daddy was sleeping in the "adult" bed in the other room...reading book after book after book.....yep, we had no TV.  I read so many picture books and chapter books out loud, just to keep the kids separated, quiet, not fussing.  I suppose at some point, I must have graded essays and planned classes, met with students, and all that jazz....of that I have no memory.  I just remember being with young children nearly 24/7.

Until this week, those times were so sweet...in my memory.

However, this week, my husband has been working late, getting home at nearly 11:00 p.m.  He now has his own projects going, so he spends his mornings working on them.  Our kids are older, too, so this weekend, during the hours he was home, they were asleep.  He was out the door by 10:00 am this morning.  11:00 am yesterday.  And he left shortly before they got out of school on Friday.

The kids don't demand the constant attention that they did back in the day.  In fact, although I'm home alone with two boys right now (only one of which was born in the days of sweet memories...the other came along later and one of the boys from the time of sweetness has since moved out and lives on his own), they are rarely in the same room with me.  One is upstairs studying for finals.  One is killing zombies online in the family room.

But my goodness, today has been so LONG.  Getting these boys to accomplish what I need or want them to accomplish (housework, schoolwork, holiday planning, etc.) is making me remember just how stressful those "sweet" times were.  I think I'm having PTSD flashbacks or something.

Here is sit.  It's totally dark out.  It feels like we should be winding down for bed, but it's really not even 7:00 p.m.  There are hours and hours to go before I sleep.  I have not been a nice mother today.  I just wanted everything done in a timely and smooth manner.  How could I have forgotten that no one in my family but me values timeliness and smoothness?

Hopefully those sweet memories will come back when this time also has passed.

Because I sort of miss them.  I was much happier in my memories than I think I was during that reality.  Hopefully, we'll all create fake memories about the current time which will place us in a happy context because the memories I'm sure I created for these two boys today were certainly not happy.

The Harsh Reality

Many bloggers have caught a lot of flack for not being gung-ho SGK/Pinktober rah-rah.

Part of the problem is that the Pinking of Breast Cancer denies reality for many.  Of course, we all want to hear stories about long term survivors and those whose lives weren't drastically changed.  Even more, we want to know about people who have survived treatment and then climbed Mt. Everest or sailed around the world in a hand-hewn canoe (obviously a canoe with a sail...you get my drift....no pun intended).

That all can provide inspiration, hope, and by golly it's happy.

But the reality which is denied is much more private.  It's where none of us really wants to dwell.  Yet, once an endurer ends up in that reality, it's not such a happy place, and it really isn't all that pink implies.  It's much more shades of gray. The hard part is, not a single one of us has any way of knowing which reality will be granted to us.

Here's a wonderful blog that shows a different reality. It's loving and touching, and the opposite of the pinkality that is so often portrayed in the media.  You should check it out.  Angelo and Jen are an amazing couple, full of love and compassion.  Angelo's blog shows the gray side of the journey.

Slip, Sliding Away, redux

About 11 months ago, I wrote this.

The past few days, I've been having some odd twinges, feeling swollen, weird PMS-like pains on the same right side.  I really feel like something is off on my right side.

Having been sidelined by foot problems and elbow problems for the past several months, and coupled with dealing with the declining daylight, end of the term stress, and financial woes very inappropriately (can you say fat, salt, and carbs?) during that same period of time, I have laid down a really nice layer of fat.

I've poked and prodded the right side of my chest quite extensively, and it just feels different than it did a while back.  It also feels like there is tension pulling from left to right (like a bra that isn't adjusted quite right).

After a long look in the mirror and a similarly long look in a skin tight shirt, it is very apparent that my right side is quite different than it used to be.  Almost exactly like it was 11 months ago, only this time over to the right, more toward my arm pit than before where it was lower on my chest.

So, I have an appointment with my plastic surgeon a week from Tuesday.

If something needs to be readjusted, I'd so much like to have it done before Dec. 31, which is highly improbable, so that it falls under this year's insurance.  I am seriously considering asking to have it down with just a local anesthetic, too.

Gak!

Even more stressful, my husband's new employer is not cooperating with returning some insurance form that must be returned to BGSU by 12/9.  If it isn't returned, he will not be able to be covered by my insurance and will, as of 12/31, be uninsured.

Our truck is--for all intents and purposes--dead.  We will find out more about it within days.  If it is, indeed, irreparable, we will have to purchase a new (to us) vehicle ASAP.  It will be nearly impossible for me to make the doctor's and OT appointments on top of my school obligations next week **and** figure out how to get him to work.  As it is, there is at least one day that he'll have to be dropped off at work about 4 hours before he starts so that I can have the car to do what else needs to be done.

I hope the rest of you are having a happier December than I am right now.

I'd like to say there is nowhere to go but up, but, alas, I fear I am too jaded to buy into that right now.

Thankfuls Nov. 14-20, 2011

14.  I'm thankful for Smartwool socks.  They are just about all I wear.  They are clearly worth the investment.  I'm also thankful that I am able to find them at greatly reduced prices.  They are incredibly comfortable on my chemo-ruined, always cold feet.

15.  I'm thankful for weekends away, even though I rarely go far, even if they would be seen as many as mundane.  There's nothing quite like a weekend when I don't have any real responsibilities other than making sure I have on pajamas and have good, fun food.  This past weekend, that all involved Hello Kitty pajama pants, steak, brie, jambalaya, and lobster bisque.

16.  I'm thankful for flat screen tv (did I mention this one before?).  They are so much more attractive than the older, big bodied boxy televisions.

17.  I'm thankful for Facebook.  I have an essay brewing in me, have for years, about how Facebook--with all it's problems and weaknesses--is sort of like the backyard fence of days gone by.  I have much better friendships with local friends because of Facebook.  And that's just a beginning.  Overall, there are more positives to Facebook than negatives in my life.

18.  I'm thankful for prescription strength pain relief.  I'm not sure if what I've taken to ease the pain of my (possibly) broken toe makes the pain less or makes me just not care enough to notice it fully.  It doesn't really matter, it works.

19.  I'm thankful for short work weeks.  This is perhaps my favorite week of all semester:  two days and then Thanksgiving Break.  I <3 Wednesday and Friday of this week.  No obligations.

20.  I'm thankful for our DVR.  As I work to understand my "new" brain, I've come to the realization that I can focus much better when I grade essays with mindless tv running.  Criminal Minds and NCIS are a perfect backdrop to freshmen compositions.  Their formulaic stories can occupy that portion of my brain that keeps me unfocused, that portion that wants to make lists or plan days or listen to what others are doing in the house or focus on worries or balance checkbooks or plan classes when I'm really needing to give essays my full focus.  I'm thankful that I can watch whatever, whenever.

Memes, again.

I was just copied on another "awareness" meme on Facebook.  This time, the person who sent it to me is a long time, much loved, highly respected friend of mine.  One of those awesome friends I met online over a decade ago and whom I have grown to love deeply.  She is, in many ways, a much loved mother figure to me.  And I don't want to hurt her feelings although I fear I may have.  I hope, if she reads this, she realizes that this in no way changes my feelings toward and about her.

Anyway, this new meme deals with your birth month and date.  Each month is linked to a country.  You then post "I'm going to ______ for X number of months" with the number being the date of your birth.  So, I'd post, "I'm going to France for 27 months."  Of course, you are supposed to keep it secret from men, and in doing so, we raise awareness for breast cancer.

This one really annoys me.  Maybe because, we just came out of Pinktober, which is supposed to raise awareness.  Maybe because so many women with breast cancer or who have come through breast cancer can't even begin to wrap their heads around the opportunity to travel to a foreign country for many months.  We have no way to afford it.  We can't even dream of taking time off work because we carefully hoard our vacation and leave days, always wondering if we will need them for further treatment.  Maybe because it's so US-centric.

Here's what I wrote about it to the entire list of women (most of whom are strangers to me).  I'm sure I ruffled some feathers, but I just couldn't stop myself.

------------

• I'm not knocking anyone, but if OCTOBER itself doesn't raise awareness, playing little games isn't either. Did anyone here go do a BSE or make an appointment for a mammo after getting it? You want awareness? I'll send you a picture of my chest. You can post it on your fridge. I bet I could find 12 women to send you pictures of their mutilated chests and you could make a calendar out of them. Maybe we all define awareness differently.
  
  I think that these little games make bc seem like a game, like something that people either win or lose. Sadly, most of us who "win" only do so temporarily. And win at great cost physically. My left arm will never be the same. Every time I move it, I feel where lymph node removal and radiation have damaged it. I have to massage it in a particular way every day or it swells. I have to wear a really not sexy or fun compression sleeve which just makes me stand out all the more. Even with tank tops, especially when exercising, every day. I can't get on a plane without wondering or worrying if doing so will fuck it up for the rest of my life. I have heart and lung damage from treatments, ongoing treatments. Great because heart disease kills more women than breast cancer.
  
  Here's something else that I've written about awareness.
  http://desideratajourney.blogspot.com/2011/05/awareness-pt-2.html
  
  and I'm not feeling sorry for myself or whining. Just saying that it's not a game. And it shouldn't be secret. Because this affects men, too. They get bc. And they live with those of us who have had it.
  
  Here's another little tidbit about awareness....early detection doesn't really save lives or increase survival rates. It improves quality of life, perhaps, because treatments don't have to be as invasive. But recurrence rates, over time, don't really change.
  
  I have a 19 yo student who has bc. I have a lot of friends who nursed for many years who are in their 30s who were diagnosed. Our treatments age us 10 years. They damage our brains. They increase our odds for Alzheimer disease. I have a brain that now scans like that of a 20 or 30 year drug addict. I've lost IQ points.
  
  It's just not fun. And to make the awareness memes fun and silly is, in my opinion, really disrespectful. I struggle to play real games now. I'm forbidden to play some games. I can't play volleyball. I struggle with the memory games that my kids like to play. I can't retrieve words for trivia games.
  
  So, yeh. I probably shouldn't have said anything, but I couldn't figure out how to get my name off this.
  
  

It's the little things in life...

It's the little things in life that can make or break you.  For the last six months or so, a little thing has been wearing away at me, and I'm nearing a breaking point.

an example of extreme lymphedema

I've had problems off and on with "Golfer's Elbow" in my right arm.  However, somehow, in trying to be healthy, I injured my left elbow sometime last winter or spring.  And now it's driving me insane.  This is complicated by having had lymph nodes removed on that side, so treatment is challenging.  That band that you might see some people wear isn't a "safe" option, as anything that limits the potential movement of lymph fluid can lead to lymphedema.  There are a lot of reasons to want to avoid lymphedema, but suffice it to say, it's ugly and uncomfortable.  I'd rather avoid it.

I've done occupational therapy with one of the best lymphedema specialists in the area.  I've done exercises.  I've done iontophoresis.  I've gotten up way earlier than anyone should have to get up to have ionto done.  I've pretty much stopped all exercise (I'm sure I'll catch you all up on the issues I'm having at the other end of my body that are also interfering with exercise).  I've done ice.  I've done rest.  I've done massage.  I've given it time.

Generally, this condition clears up over time.

Finally, and only because of the incredible trustworthiness of my breast surgeon and the wonderful nurse practitioner Nurse Pez as well as the most wonderful practitioners  at NWOhio Orthopedics, I decided to break one of the inviolate rules of lymphedema avoidance (no needles).  And I submitted to a cortisone injection.

Those of you who have been following my health saga know that I hate needles.  I fear them.  I despise them. I do not happily succumb to injections.  I tend to not succumb to them without the aid of anti-anxiety meds.

So, with a little help from Mama's Little Helper Xanax, I got an injection last week.  Nurse Pez did great.  The pain of the injection, as all so far, was way less than the week of anxiety leading up to it.  The thought still turns my stomach.

And it worked.

For three days.

Now the pain is returning.

Sigh.

So far, it's not too bad.  And maybe it's not getting worse.  Hopefully, it will resolve over time.  Meanwhile, I continue to rest the elbow (as much as one can rest an elbow...I still have to do things that cause pain, such as hold things in my hand and grocery shop).  Yesterday, carrying a water bottle caused shooting pain.

However, it's not as bad as it was, and it's not getting worse.

So, that's all good.

November Thanks 2011, week 2

7.  I'm thankful for good friends, too many to list.  They support me, make me laugh, and help make life fun and exciting.
8.  I'm thankful for a dishwasher.  Need I say more?
9.  I'm thankful for good mentors for my boys.
10.  I'm thankful for health insurance.  Very, very, very, very thankful for health insurance.
11.  I'm thankful for pain relief of various sorts.  Anti-inflammatories rock.  Steroids suck to have to take, but the four or five days that my elbow doesn't hurt when I take them for a week makes it all worth it.  I'm also thankful for one elbow that doesn't hurt all the time because if both always hurt, I don't know what I'd do.
12.  I'm thankful for healthcare providers who are personable and efficient.  It's wonderful, in an odd sort of way, to be excited about going to the doctor.
13.  I'm thankful for my sons' friends.  Having young people around helps keep me young.

November Thanks 2011, week 1

It has now become rather de rigueur on Facebook and elsewhere in the month of November to post one item a day you are thankful for up until Thanksgiving.

I'll be doing that weekly.  So, here we go for week 1:

1.  I'm thankful for my husband who has supported me through a lot in the 26 years we have been married....burying babies, cancer, job loss, financial emergencies....just to name a few.  He also works hard to keep the home fires burning.  On top of that, he's a good father and role model for his boys.

2.  I'm thankful for the Marvelous Middle boy, who I know feels overlooked quite a bit, but such is the nature of middledom.  He's taught me more than he will ever know about unconditional love, acceptance, and passion.  He's growing into a strong young many, dedicated and diligent.  He has passion, faith, and willingness to do what is right over what is easy makes me proud.  He's proven himself as a loyal brother and friend.

3.  I'm thankful for the Feral Third.  Life would have been too easy if not for him.  He keeps me on my toes.  His love of beauty and texture amazes me. He's a deep thinker and asks questions that keep me thinking.  He is mature and yet also enjoys being young.  He pleases many around him and always has fun and unique insights.

4.  I'm thankful for The Eldest.  I've learned a lot raising him, and now that he's an adult, I enjoy spending time with him.  It's been great watching him fully enter the adult world, showing responsibility and maturity.  He's always got something to say about everything.

5.  I'm thankful for my students.  Of course, they keep me employed, but that's just the start of it.  They keep me young at heart.  They teach me more than  I teach them.  They make me laugh.  They make me smile.  They are the high point of my job.

6.  I'm thankful for steroids that take away my elbow pain.  As horrible as they make me feel....flushed, jittery, insatiably hungry, sleepless, anxious....the fact that they remove the pain makes it all worth it.

Scream it from the mountain tops, sister!

My friend Pattie and her husband have had a long 10 months.  Last winter, he was diagnosed with brain cancer. As a result of a bad and surprising reaction to a very toxic form of chemo, he nearly died.  He was unable to continue with the chemo, so ended up with whole brain radiation which was very hard on him.  Meanwhile, Pattie has held down the fort, doing all the driving, managing records between many doctors, at least two hospitals, tending to a much weakened husband who has no memory of how sick he was.  They are just now climbing out of the deep, black hole; however, as anyone who has been on such a journey can attest, they are much changed.

This is a post Pattie recently made to Facebook.  She is by far not the only one who feels this way.  Her friends are not the only ones who can learn from it:

I am tired.

But…

I am not tired of taking care of D.

I am not tired of getting his medical records, or taking him to his appointments.

I am not tired of being his wife, but…

I am tired of people telling me to take care of myself, I do.

I am tired of people telling me I need to get out more, when I want to, I will and I do.

I am tired of people telling me to come visit them, it is just another pressure you are adding to my life, when I want to, I will.

I am tired of people telling me I need therapy. (I have, I do, but on my terms).

I am tired of people telling me the weight I gained when Drew was sick will fall right off…it won’t…it doesn’t…but right now it is the least of my fucking concern, not yours and stop looking at me ‘that way’.

In short, I am tired. Not of my life or taking care of Drew, but of everyone telling me how I should feel.

I will call, visit, or ignore you, whatever, on my terms. It is one thing I have learned through all this. I love each and every one of you, but please, stop telling me what I need.

I know what I need, I am crawling out of this hole I was put into with no choice, but I am and I will do it on my terms…not you telling me what I need to do.

MRI results

I never got around to mentioning it here, but I had my "annual" MRI (or rather the MRI which I guess is to become an annual thing....) and the results were "unremarkable."  In this instance, it's good to be unremarkable.

I'm not sure the stress and expense of an annual MRI is called for, seeing as I have very little breast tissue (probably an "unremarkable" amount) and any recurrence is likely to show up distally, in my bones, liver, brain, lungs or all of the above.  At that point, it becomes "incurable."  Those types aren't diagnosed until there's some sort of symptoms.  It's unlikely that I'd experience a recurrence while I'm taking Tykerb, but that doesn't mean that I don't think about it often.

Meanwhile, I'm happy to be "unremarkable."

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 endurers....so 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.

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 dunno.....you 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:)

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.

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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.

Specifically:
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 www.geojourney.org 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:)

Thought for the day (08/06/11)

 

Be not disturbed at being misunderstood; be disturbed rather at not
being understanding - Chinese Proverb

Komen is OK, but not for the Cure.

There's been a lot of chatter in blogs lately about Komen, pink branding, and, most damning, that very little of the KOMEN money...all those races and walks and bracelets and ribbons...actually goes toward researching a cure for cancer.  There's also talk that Komen is in bed with big pharma, which admittedly, has its own set of issues.  I deny none of this.  In fact, while I will be running in the local Race for the Cure this fall, I won't be putting together a team, nor will I be asking for donations.

So, you might be asking, why the heck is she even telling us all of this.  She sounds rather wishy-washy.  If she's against Komen, why is she even participating?

I want to clarify:  I am NOT against Komen as an organization at all.  I'm against the duplicitous nature of the "for a CURE" mumbo jumbo.  If an organization raises millions of dollars "for a cure," I expect that, quite frankly, a lot of their money should go toward a cure.  Instead, approximately 25% goes toward research.  When it comes to research dollars, only about 3% go toward research on metastatic breast cancer which is what actually kills the absolute vast majority of people diagnosed with breast cancer.  Komen's mission is to end breast cancer.  Yet, almost as much Komen money is spent on fund raising, office expenses, etc. as goes toward research.

But I'm letting all that roll off my back right now, because one thing Komen does, and does superbly, is support those with breast cancer, and for that, I'll run.  I have directly benefited by Komen funding in one way, especially, that might potentially prevent me from having an reccurence.  One way that has been life changing.

Exercise.

A year ago, I attended, a yoga retreat for breast cancer survivors that was funded by Komen and private donations and Duke Cancer Center.  It was an amazing experience, one I shall be forever grateful for.

However, much more life changing was my participation in a Komen grant sponsored exercise program here in town.  C.U.R.E. (A Community United Through Relationships and Exercise) was one of the best experiences of my life (some might think that my life has been boring).  Granted, we were a small community, but what we learned about exercise, alone, made the experience worthwhile. 

I am much, much stronger than I was before beginning the classes.  I also had the opportunity to try different forms of exercise, for instance spin (and I decided that I really do NOT like it) and aqua fit (water aerobics, two thumbs up).  Zumba, which I really did not think I would like, turned out to be one of my most favorite exercise options, and I now attend at least two zumba classes a week, have purchased a zumba game for our xbox kinect!  I'm in the market for the best option for zumba shoes.

I also developed relationships with other bc survivors I may not have otherwise developed.  For instance, one participant was a woman I'd known in passing for several years, yet I didn't know she had had bc and she didn't know I had.  On the surface, we are two vastly different women, but we easily found commonalities in the CURE classes. 

The teachers were very awesome as well.  As trained exercise specialists, and young very fit women themselves, I would have previously been disinclined to chat them up; however, that was so not the case with these CURE instructors.  The one I exercised with the most frequently even went so far as to come up with a specialized exercise routine for me and one other participant as we were a little stronger and more able than some of the others.  Regardless, we all had fun, we all tried out new activities, and best of all, I learned to enjoy sweating to the point that my entire head was wet.  Who knew?

So, for this, and this reason alone, I'm not convinced that Komen is worth totally ditching.  I have certainly benefited from Komen's generosity in funding these programs.

Oh, and now I've "graduated" to the regular classes at the Rec Center and can hold my own with students who are the age of my own children.  Some times, I even show them up :)

Beautiful Day in the Neighborhood

Wow.  It has certainly been a long time since I've written anything.  It's not that I don't think about blog posts.  I have many good intentions; I have many ideas for posts and notes jotted down; however, I have moved my laptop from the couch to the table.  This is both good and bad.  It's good in that I'm less likely to get sucked into watching tv and hanging out online.  It's bad in that I don't hang out watching tv and hanging out online.  This change in location also means that I'm more apt to do "drive by updates" on facebook, but less likely to sit down long enough to compose something thoughtful.  I've read enough blogs to realize that the self-indulgent, thoughtless blogger is worse than no blogger.  Hence, my silence.

However, today was such a nice day that I'm compelled to share it with you.  Actually, the day had nothing to do with me.  It was a beautiful day for my youngest son, aka The Feral Third.

TFT has had a rough month or so.  You see, his soccer team merged with a team from another club and there will now be enough kids to have two teams.  Sadly, TFT did not make the A team.  Even sadder, all of his buddies did make the A team.  This has been very upsetting and devastating for him as you might imagine.  No matter what spin we put on it, he knows that he is going to be playing weaker teams, in a weaker division, not going to tournaments, and will not have the prestigious coach.  He also believes this marks the beginning of the end of his soccer career and he foresees playing JV in high school while his buddies all play varsity.  Yes, we adults know he's waaaaay over analyzing this all, but reality is that he is over analyzing this and this is his life right now.  He totally feels slighted, insulted, and demeaned.

Yes, we've all been there, done that and lived to tell the tale.  He just has a lot of emotional energy to put into this tale these days (weeks?  this has dragged on and on).

Anyway, to make what has been a miserable month shorter for the sake of the rest of you (no one else should have to live my misery and believe me, I've shared it enough already with others), he has felt overlooked by his friends who, being on the A team, do some sort of running club or something.  He was invited once and didn't go because we got off to a slow start (no pun intended) that morning, but he clearly feels that if he were wanted there, he'd have been in on it from the beginning and then he found out that they also play soccer afterward and, again, he wasn't "in on it".  He was an after thought.

Again, play me a violin....

So, that sets the stage.  Probably 99% of all of this angst is in his imagination, but he's been bringing that imagination to life in our family's daily life for a month now.

Last night, though, things began to look up.  Two of his mates spent the night and they never once talked about soccer.  Thank the stars.

It was a total flash back to 2005 or so, when my eldest (hmmm....do I have a blog name for him?  I might, but thanks to chemo brain, I can't remember) and his mates would get together.  It was a mini-me of the current teenagers hanging out here at the same time.

On top of the emotional wanking that has been going on, we've also had lots of late nights and slow mornings for the past month.  I was out of town for about 10 days, and my husband is an early to bed kind of guy, which meant that the kids were very, very late to bed.  Those of you who still have enough control over your children to have bedtime, might be shocked to hear that an 11 year old was regularly going to bed at 2 a.m. or later and sleeping until noon, but that is a pattern we've fallen into.  Add in a visit from the cousins which makes for a week with looser rules than usual, and...chaos regarding sleep hygiene.

So last night, I agreed to these other two boys spending the night in part to keep the hormonal Feral Third happy but also because I saw it as an opportunity to enforce a bedtime without an argument.  Who wants to act like a toddler and throw a tantrum in front of their friends?  The deal was OK to the sleepover if they agreed to lights out and a movie turned low at midnight. 

It worked.  I removed all the video game controllers so that they weren't tempted to cheat, told them if they'd lay still, they'd be cooler, and they were out.

The Third Wave

This also meant then were awake fairly early this morning.  I was reading and came out of my room at 8:45 and found all three of them awake.  Awake and looking like the older boys they so admire.  I have since begun referring to them as The Third Wave.

Sorting Game Pieces

Now, back in the day, in 2005 or so, my eldest and his buddies would have some wild Risk games.  They'd combine games, boards, pieces, and rules and play for entire weekends.  There have also been many Risk games played at our home by many, many young boys in this town.  It is also a tradition to play Risk with the cousins when they come to visit each year.  It was very heart warming to see The Third Wave getting it on with World Domination with such glee.

Of course, you can't have boys in the house (even if they are on the patio) without feeding them.  I was flashing back to the days when I would regularly stock up on cheap frozen pizzas, frozen burritos, jarred spaghetti sauce, and other food items in mass quantities because I never knew when I'd be called upon to provide food for the hungry hoards.

It's been awhile.

So a trip to the grocery was called for. Hoping that this will not be the last time we have a hoard of hungry boys, I stocked up. 


Then I got to do what I love doing the most.  Providing food for people I love. 

And these people were very appreciative!

The day continued without a hitch.  It included a walk to Walgreen's, a game of volley ball and one of badminton.  They then went to one of the other boys' homes for dinner, returned here, were playing something that involved yelling and running in the dark, and at 10 p.m., more than 24 hours after it  started, the "sleep over" ended.

No fuss, no muss (they did have to be persuaded to clean up the family room, but they did a good job), no arguments, and only one injury (and that was in the last 15 minutes).

I know my member of the Third Wave was asleep early and easily tonight, and I hope he is feeling better about his predicament or at least had 24 hours of not stewing over how unfair life can be at times. 

Yes, it can be, son, but it is still a wild and wonderful place and you might as well ride it hard while you can.

And I'm glad there are Risk players back in the house.

Justice for Henry Granju

My blogging mama friend, Katie Granju, is coming up on the first anniversary of the death of her son, Henry.  Thus far, the authorities have not given the circumstances surrounding his death a full and complete investigation.

Please, in honor of all those struggling with addictions, for all the mamas, for the safety of all of our children, please sign the following petition.

http://www.change.org/petitions/justice-for-henry-granju?utm_medium=facebook&utm_source=share_petition&utm_term=own_wall

Hey, it's my birthday weekend, so do it because I've asked, OK?

I've written more about Henry's case.  You can click on "Henry" in my tags to follow more of his story.

Love to all,

Dawn

Beautiful

http://www.thescarproject.org/gallery.html

Pink Abyss

As we all know, pink is the color of breast cancer.  Pink is a soft color.  A feminine color (in Western culture).  A gentle color.  A warm, welcoming color.  It's a baby color.  Pink represents romance, love, friendship, harmony.  It represents innocence and youth.  Pink is just so PINK.

There's nothing wrong with the color pink.  It's not, though, typically thought of as a "power color."  No law student interviewing for an internship with a judge is going to show up wearing a pink suit, for instance. 

As Marshall McLuhan said, "The medium is the message."  This is seen nowhere more clearly than in the pink-itude of breast cancer.  In previous entries, I've written about the realities of breast cancer, and they really aren't all that warm, welcoming, innocent and harmonious.  Yet the medium of pink (ribbons) has become the message of breast cancer awareness.  It is also becoming controversial as bloggers and organizations take on the pink ribbon campaign.

I've never liked pink.  My mother loved pink.  I think it was her second favorite color next to baby blue.  She was a very pastel oriented person.  Unfortunately for her, her daughter turned out to be very much the tom-boy and very much did not like pink no matter how often I was told I look good in it.

Needless to say, being diagnosed with breast cancer has not helped foster my appreciation for pink.   Early in my treatment, a friend who is also an endurer offered me a golf visor with a pink ribbon on it, saying I could have it if I wanted but that she didn't "need to be reminded of breast cancer.  Fake boobs do that for me."  Very true.  As an endurer myself, the limited range of motion in my left arm is a constant reminder of my cancer.  The cognition deficits I struggle with are a daily reminder.  The damage to my children's psyches reminds me that we are all altered, and not for the better, by cancer.

Yet I find myself inexplicably drawn to pink ribbon paraphernalia.  Oh, I don't mean the cute pink teddy bears or pink ribbon key chains.  I most certainly won't be getting a pink ribbon tattoo.  Daily, though, when one particular group post comes through my Facebook feed, I find myself clicking on items to buy that are decorated with pink ribbons.  Pink ribbon running shoes, fleece jackets, and water bottles draw my attention. 

I never buy them.  I'd be uncomfortable wearing them.  I do, though, understand why others buy them.

At one point when I was in treatment, my infusion cycle matched that of another endurer.  I mentally referred to her as "the pink ribbon lady."  I've since run into her at other breast cancer oriented events.  We chatted as we sat, tethered to our poisons, for long periods of time.  From what I can infer, she's a mother of grown children, a grandmother, and also has metastatic her2/neu breast cancer.  She was there getting the herceptin infusions that are keeping her cancer from progressing.  As much as I could tell, she is "healthy" and living a very active life, which is awesome and gives me hope.

I refer to her as the "pink ribbon lady" because on one particular day every single item of clothing that I could see had at least one pink ribbon on it.  Her hat, her shirt, her sweat pants, her socks, her tennis shoes, her jacket, and her earrings all had (albeit tasteful) pink ribbons somewhere.  She was also talking about having attended a "pink ribbon" event the previous evening and plans for attending another the following week. 

Now, maybe her clothing was part of her infusion armor. I wore my "Hey Cancer, you picked the wrong bitch!" t-shirt on infusion days.  I also wore my Pac Man t-shirts to infusions.  I carried Pac Man band aides to be applied over my port after my infusions. I even mediated to Pac Man music during infusions. I'm all about infusion mojo.

I won't, though, wear pink ribbons.  For starters, they are pink.  I've made it clear I don't like pink.  However, every time I look at some pink ribbon festooned item, I also think "I'd never wear that."  I don't want to be known as the Breast Cancer Lady.  Trust me, I don't hide my diagnosis.  I also wear a lymphedema sleeve quite frequently.  I probably talk too much and in inappropriate situations about cancer and treatment.  On the other hand, I'm creeped out by the idea of wearing breast cancer ribbons on my attire.  During treatment, I had a pink boxing glove key chain that I attached to my bag and a real pair of pink boxing gloves on my power alter, but those are gone now.  I don't feel drawn to them.

Still, I find something attractive by the pink culture.  Although I struggle with the Komen organization and pinkwashing of product marketing, I also can't say I won't participate in the Race for the Cure this year.  I found participating in the Race last year exhilarating.  (I promise here that I won't hit anyone up for donations, though, and I won't be organizing a team again.)  There's something exhilarating about being surrounded by others who have shared experiences, fears, and hopes.  I also don't mind the support funding offered by Komen.  I fully enjoyed my exercise classes for women with breast cancer, funded by a Komen grant.  Best classes ever!  I don't, though, anticipate using the Komen bottle koozie or change purse that I was given. 

There is something about the message of hope and progress and belonging that supersedes the other messages in the pinkness of the ribbon medium.

I look at pictures of my friend and her pink ribbon dragon boating paddle, a friend who is many years out from treatment and doing well, and I think if she can do it, I can do it.  I relied heavily on messages of strength and hope during treatment. 

I'm planning on buying a new kayak next week.  I doubt it will be pink.  If I could find a pink kayak paddle, I'd be all over that.  I'd certainly add a pink ribbon decal to the bow of my kayak.  I'd wear a pink whitewater helmet or life vest.  I'd wear pink ribbon lifting gloves with pride.  I'd probably wear a tech shirt that says, "These boobs don't jiggle. Running for my life" or "Cancer sucks.  Running for my life."  I already have one that says, "Chemo is easy; chemo is hard."  I'd use pink kettlebells.  I'd wear a pink biking jersey.

A pink paddle, I think, sends a much more empowering message than a pink teddy bear.

Pink is here to stay.  The pink ribbons and teddy bears aren't going away.  I just want women to also find strength in pink, to see pink ribbon hand weights and heavy bags, not just yoga mats and water bottles.  Instead of racing for  a cure, racing in spite of no current cure.

Maybe I'll be out on the river some day and some woman whose breasts have been chopped off, who can't raise her arms more than 30 degrees from her side, who that morning had to ask someone to tie her shoes for her and pour her a cup of coffee will see my pink ribbon kayak paddle and draw some strength and determination to keep putting one foot in front of the other. 

Awareness, pt. 2

Maybe I should make this entry pink, pink lettering on a pink background, totally unreadable, just a sea of pink.  Why would I want to put all this effort into writing a blog entry just to have it unreadable?  Why do people keep making breast cancer seem like a happy, fun, feminine, cool, trendy disease?

The facts aren't that happy.  Sure, it's not the death sentence other forms of cancer are.  Let's face it, some cancers are quick, brutal, and rapidly deadly.  For those cancers, the question isn't "if" but "when."  I have a friend who has a specific type of cancer that has a 0% five year survival rate.  ZERO percent.  I don't know what the one year survival rate is, but it's not great.  Another of my friends was told she'd live 12-18 months.  She fought hard. She battled mightily.  She lasted 15 months if I count correctly.  Compared to those types of cancer, sure, breast cancer rocks.

But do all of those people who are so happily pink, festooned with ribbons and feather boas and running and dancing and doing all those fun things for a cure really aware of how great breast cancer is?  How survivable it is?  How much progress has been made?

For starters, when we talk about "surviving" with breast cancer, we speak of surviving five years.  The term is "the five year survival rate."

Pardon me for not being too chipper about that.  I'm coming up on my second cancerversary. 

If a woman happens to be Hispanic, which I am not, she's more likely than other women to get aggressive breast cancers and die from breast cancer.  Were you aware  of that?

I've heard people, endurers as well as the non-effected, say, "At least the tumor is estrogen (or progesterone) receptive.  There's a pill for that."  Yes, indeed there is.  And those tumors tend to grow more slowly.  See how aware we all are?  Yet, not 100% of all those hormone receptive tumors respond to medication.  In fact, for people who are progesterone positive, under 20% respond to hormone therapy.  Oops!  Wasn't aware of that fact.

Many people are also aware that another type of cancer, the type I had, is particularly aggressive.  It's called HER-2+ breast cancer. But joy of joys!  Herceptin cures it!  And if it does come back, "you just do herceptin treatments for the rest of your life."  Well, that's probably correct.  As long as the herceptin continues to work.  Of course, Tykerb is also an option.  But sometimes that doesn't work, either.   And, the woman dies. 

We are also all aware that breast cancer is curable.  And that's true.  To an extent.  Most women don't die from the cancer in their breasts.  They die from the cancer that has spread to other places, their brains, their livers, their lungs, their bones.  If the cancer just stayed in our breasts, we'd be fine.  Cut it out, chop 'em off, radiate 'em.  End of story.  However, that's not how breast cancer works.  There's never, ever a guarantee that even the smallest spot of cancer hasn't sent cells out into the blood stream or lymph system, so many (most) women have cells, lurking, waiting to come to life.  Yippee.

Many of us are aware that there are things we can do to "prevent" breast cancer.  No, not really.  Other than cutting off breast buds at birth, there really isn't anything that "prevents" breast cancer.  There certainly are ways women can reduce their risks, their life time, risks of breast cancer.  These include staying within five pounds of a healthy teenage weight, exercising an hour a day, eating a mostly plant-based diet, breast feeding, having babies earlier rather than later.  These are not "preventative" as we'd like to think.  Breastfeeding is not the same as wearing a condom to prevent pregnancy.  A condom is, what, 99% reliable although users of them tend to be less so?  Breastfeeding your baby for a year, two years,  a total of 13 years spread over several children, does nothing more than reduce one person's life time risk of getting breast cancer.  It's not the same as, say, not smoking to prevent lung cancer.  Being thin, fit, young, and nursing does not mean one doesn't have to still screen and hope for the best.  Many women aren't aware of that.  When I was diagnosed, some ardent breast feeding person who was  touting breastfeeding as "preventative" had the gall to ask me if I had a family history, as if...whatever.  She said she was counting on nursing to "protect" her.  Idiot.  Simple stupidity.  Further proof that the USA sucks at math and mathematical reasoning.

Let's talk about long term survival.  We are aware that a lot of women survive for years.  Women are typically over 60 when they are diagnosed.  Let's face it, when you are in your late 60s or your 70s or older, "long term" takes on a whole different meaning than when you are in your 20s or 30s or 40s. 

And none of this takes into account the negative effects of cancer treatment on a person's general health.  For starters, cancer treatment can lead to new cancers.  We are all aware that radiation can cause cancer.  Cancer treatment often includes radiation.  There's a double-edged sword.   Better yet, there's the chance that treatment will cause heart, liver, or kidney damage.  The Tykerb I take now is black box labeled for liver damage, "sometimes fatal."  Nothing like killing yourself to stay alive.

Herceptin (and Tykerb) can also cause heart damage.  My radiation treatments also got a part of my heart.  Isn't that swell?  Oh, yes, my lung, too, was radiated.  Heart, liver, and lungs!  Oh, my!



There are also lesser, yet also life altering, long term effects, such as a change or decrease in the ability to taste, chronic fatigue, mental fuzziness to the point that some people are unable to continue in their careers, loss of mobility, nerve damage especially in the feet and hands, chronic constipation or the opposite, chronic diarrhea.

I don't think most people are aware of this.  That to "survive" does not mean to "get better" and that life isn't always pink and rosy are not parts of awareness.

Yet, we are aware that there's a "cure" out there.  In fact, when it comes to breast cancer and pink, "awareness" seems to be synonymous with "cure."  However, one would think that if an organization were really, truly concerned about a "cure" their money and focus would go to what...awareness/education? or research?  prevention or parties? I'd like my money to go to research and prevention.  Check out these charts to see where it really goes.

Just so you are aware.