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.

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• 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."