Relay for Life 2011

To make a long story short, I asked on Facebook if anyone knew of a Relay team I could join this year.  The team I joined last year is defunct.  Somehow, my looking for a team became creating a team....

So, if anyone would like to donate to me or donate to my team or if anyone local would like to join our team, please feel free do do so.  Due to a technical glitch, I can't access my personal page, but you can donate or join by going here.  My name is Dawn Hubbell-Staeble (you will find me on the team twice and it doesn't matter which one) and the name of our team is the Pac Maniacs, in reference to my visualization of Pac Man during chemo and radiation.

If you are local and want to stop by, the event is this coming weekend.  Friday evening May 20 to noon Saturday the 21.  Our team will be selling muffins Saturday morning for breakfast.  My son The Middle will be dressed as Ms. Pacman for the (otherwise offensive in my opinion) Ms. Relay event Friday evening, so if you are around, be sure to drop some change in his bucket. 

Here's hoping for good weather and fun!

Thanks!

Tykerb, week 1

Welp, one week of Tykerb is down.  Fifty-one more to go.

So far, it's been OK.  I could tell you exactly how many episodes of diarrhea I've had, but that would be TMI, for certain.  It's not that bad, though, because it's not accompanied by the "traditional" discomforts of cramping and other intestinal discomfort.  All in all, it's been pretty ::meh:: in that regard.  Of course, I haven't had to work or anything like that this week.  The nausea, though, is increasing.  One night I took compazine for it.  Guilty pleasure, here.  I rather like the spacey way compazine makes me feel; however, I just really don't like having to take stuff, so I haven't taken any more.  I do feel queasy, though, much of each day, mostly in the afternoons and evenings.  According to the nurse I spoke with the other day, one of three things will happen: this will all go away over the next few weeks after building to some sort of peak first, or I'll have low grade continuous symptoms the entire time I take they Tykerb, or I will have intermittant symptoms.

She gets paid for telling me "well, who knows?" in other words.

I've also noticed some fatigue and some increased mental fuzziness.  WTF is up with the fuzziness? 

On the postive front, the pain I was having in my one heel and the ball of the opposite foot (which I will admit to having been ready to hear was bone mets) has been mostly cured by the wonderful NP, Julie, at NorthWest Ohio Orthopedics.  If you are in this area, I highly recommend their services.  Best of all, it's not bone mets.

Awareness, pt. 1

Day 1 with the Tykerb, and all is well.  Right this very minute, I'm feeling a little queasy; however, who isn't if they really focus on it?  Overall, it was a good day.  Technically, I accomplished little.  This is supposed to be the week that I deep clean all the public areas of our house.  Yeah, about that.....

I did manage to make some phone calls and schedule some appointments, so all is good, right?

Regardless, it was a full day.  Did some weights at the Community Center, walked a mile or so, had a visit with my NP to discuss some foot pain, scheduled further appointments with an ortho NP, and then went on a bike ride along the Maumee with the Eldest and the Feral Third.  Came home and the Eldest fixed a wonderful dinner, which 4/5 of us ate on the patio.  The Feral Third and I played catch for awhile and then, after he came home from his internship stuff, the Middle and I took a walk.  Now, the Feral Third is in bed, the Middle is doing homework, the Old Man is watching something boring on TV, and the Eldest and I are watching Anthony Bourdain.  But enough of this self indulgent, twitter-esque blather no one really cares about.

Instead, a day or so ago I threatened to indulge myself in pondering about the whole concept of Breast Cancer Awareness.  To loosely paraphrase myself, I said something to the effect that any teenager who had not been in a coma his or her whole life had to be aware of breast cancer.  It's breast cancer, for god's sake, not Leiomyosarcoma. Did you have to look that one up?  A few years ago, when my friend told me that she had breast cancer, I didn't have to look it up.

So, we are aware of breast cancer. 

In fact, most women know we are supposed to do self breast exams.  When we go for our annual gyn exams, we get a clinical breast exam.  We know that there are recommendations for mammograms, whether we believe they will find anything or will actually cause cancer or not...we still all know that it is recommended we get them. 

Everyone knows what the pink ribbon stands for. 

Do you know what the black ribbon stands for?  Look it up.

In the sense of knowing that breast cancer exists, that it is common among women, that it is eminently treatable.  In fact, if you clicked on the last link I included, and read far enough, you will read those exact words. 

And all of this is where the pink ribbon campaigns have been successful: lots of women get breast cancer, it can be screened for, it's treatable.  The pink ribbons, the boobie bracelets, the second base stealing and the ta-ta loving campaigns., though, have also brought some false awarenesses (is "awarenesses" a word?).

We are all now aware that breast cancer is fun.  Just look at the parties!  Breast cancer is yummy!  It's beautiful! It's sporty! It's cuddly! It's comfortable!

Well, you get the idea.

This had better be worth it

$3,000, give or take, of pills.

Tonight I start taking Tykerb.  I've read it's better to take it at night for several reasons: (1) it can't be taken within an hour either way of eating; (2) one might sleep through the nausea; (3) it's easier to deal with diarrhea during sleeping hours than daytime hours.

I told the younger two boys over dinner tonight.  The Middle was already aware, being pretty active on Facebook and having been following along.  The Feral Third was shocked and expressed quite a bit of dismay, but was pretty quickly soothed when I explained it was pills and not infusions and I wouldn't be bald or as sick as I was before.  Yet it's after midnight and he's still awake, so who really knows what's going on in his head.  He's feral after all.  Supposedly, he's been asleep but just woke up realizing he had neither his pillow nor his blanket, whatever that means.  The child has more pillows than the rest of the family combined, and I'm pretty sure that he has a blanket or two plus a comforter in his room and isn't reliant upon the little fleece blanket he just took upstairs with him.  My speculation is that he's been awake, probably on his laptop or playing with his ipod.  There's a reason I refer to him as the Feral Third.

My nightly dose.  Looks benign enough.

So here I sit.  In my mind, it's still Sunday although it is 12:15 in the morning on Monday.  I said I'd start on Sunday or Monday.  Guess this is as close as it gets to that.

It seems like there should be some fan fare or something.  Maybe it will become old hat at some point.  One part of chemo that was kind of fun the first time around was waiting to see what sorts of side effects I would have.  Well, fun in a sort of intriguing way, not amusement park way.  There was some appeal to the concreteness of what I'd only read about, the dirty pocket change taste, the first tingles and pains of neuropathy, the crushing bone pain.  For the heavy duty chemo, though, no one escapes unscathed.  Everyone loses their hair, for instance.  Everyone experiences fatigue and nausea to one degree or another.  Not everyone experiences everything, but enough people do that I had the feeling that I wasn't going to get by unscathed.  With Tykerb, however, some side effects vary widely.  I'm taking it without the partner chemos, which are harsher.  So, will I or won't I get side effects?  Which ones?  How many?  When?  Tonight?  Tomorrow?  Two weeks from now?

Let's just assume I won't get any. 

I think I'll take an ambien, though, anyway so as to not dwell on this any more than I have to when I go to bed.

P.S.  So as to not fritter away my summer, I shall get up in the morning, hop on my bike, head to the Community Center to work out, and then I have an appointment with my G.P. to discuss this issue with my heel, a pain like tennis elbow in my "bad" arm, and a few other niggling things.  If I announce here that I am going to work out in the morning, I'm more likely to do it.  Feel free to hold me accountable.  

Mother's Day, 2011

I love my boys.  We are not a touchy-feely, sentimental bunch.  Not by a long shot.

OK, I'll admit that I have visions of sugar plums...erm...ideal days.  They rarely come to fruition.  It is what it is.

This morning started off with my 15 year old, awake silly early for some reason--maybe one of his friends was stopping by to pick something up?  I was asleep so I don't really know why he was up.  He just was.  However, being 15, he wasn't happy being awake, let alone being out of bed, and he ended up jumping into bed with me instead of making the journey alllll the way up the stairs to his own bed.  One of the joys of having my bedroom on the first floor (one of the ONLY reasons, I'm thinking these days). I'm not using the word "jumping" here metaphorically.  He JUMPED onto my bed, spouting "Happy Mother's Day!"  My guess is about an hour later he decided that the sun was sufficiently high in the sky and his brothers both being asleep meant that he could control the Xbox, so he wandered off, leaving me with a kiss and the thought that, truely, that could have been our last ever long snuggle together.

At some point, we all got up, showered, dressed and headed off for lunch with the mother-in-law, which was nice as usual.

On the way home, we saw a turtle in the road.  We turn around to go back and move it safely out of the way of traffic.  However, this being a semi-busy rural road without much turning room.  In the minutes it took us to find a place to turn around, wait for the oncoming traffic, and shudder because we were sure each car would squish the turtle, then turn back around because there was no room to pull off on the side of the road, wait for more traffic, the very lucky turtle had made it safely across the road and was into a field.  By this point, my adhd rife family was bored, me included, so we just went on our merry way (at one point, when I identified as a homeschooling mom, I'd have pushed through my own personal boredom and turned this into a forced learning experience....now, not so much).

The Feral Third thought we should all go to a movie, so the boyz treated me to a movie.  I"ll admit, I love super hero movies.  No real surprise.  The older two were well versed in mythology before they even started reading; I sort of did my own sort of Waldorfy education for a while with them, only instead of fairies and gnomes, we immersed ourselves in heros, mythology, and comics.  It only seemed fitting we'd go see Thor for Mother's Day.  The Eldest paid for the tickets with his hard earned money.  The Middle kept the peace.  We rode our bikes.  It was a good time.  Too bad the movie was mediocre.  We did have a good time discussing the mythology, especially the use of Loki, and reminiscing about the time we had spent years ago reading Norse mythology.  I agree with the Eldest who thought we were over analyzing the movie (it doesn't deserve the term "film").  We also, as a family, don't appreciate the 3-D effects and find that they tire our eyes.  The Middle wishes 3-D was used to make the film better, instead of being used to cover up weak films.  Still, it was a super hero movie, and we had a good time.

Chinese buffet for dinner.  Don't ask.  It always smells good, sounds like a good idea, and we always, always always regret it later.

And thus ends a fairly calm, normal day.  We were all together, which rarely happens any more.

I love my boys.

Thought for the Day, May 8, 2011 (Mother's Day)

Judge Mary McLaughlin may know law, but ...

...she doesn't understand reality.

Apparently, last December a couple of girls wore bracelets to school that said "I (heart) boobies."  The bracelets come from the Keep Abreast Foundation.  The girls were suspended.  Their families filed lawsuits.  And this month, Judge Mary McLaughlin ruled, "The bracelets ... can reasonably be viewed as speech designed to raise awareness of breast cancer and to reduce stigma associated with openly discussing breast health."

I don't want to get into the psychology of the teen mind here, but I'm quite sure that teens are capable of talking about "breast health" without resorting to words like "boobies."  This is not the 1950s or 1970s or even the 1980s when songs such as Prince's "Let's Pretend We're Married" raised eyebrows. I'm pretty sure today's youth can say the word "breast."  Yep.  I pretty much guarantee it.  Here, let me ask a few.  Just did it.  Yep.  It can be done.

See, women die from breast cancer.  Not ta-ta cancer.  Not second base cancer.  Not boobie cancer.

I didn't tell my husband one evening, "Hey, I went for my annual exam today.  I got yanked and cranked. Oh, and my ta-ta has a lump in it."

I didn't pop two xanax and sit around the fire pit with my boys and tell them that I had boobie cancer.

I didn't call my best friend and say, "Yo, beotch, looks like cancer is stealing second..."

No, I said "I have breast cancer."

We certainly lose breasts to cancer, but we lose so much more.  We lose health.  We lose longevity.  We lose energy.  We lose our lives.

About 260,000 women were diagnosed with breast cancer in 2010, according to the American Cancer Society statistics.   The National Institute of Health says that about 40,000 women and 400 men will die each year from breast cancer.  That's more than the population of my city.  Imagine the uproar if an entire small college town was decimated each year.  Obliterated.  No one would be selling sexy tank tops with hand imprints over the breast area to "raise awareness."

So, Judge Mary McLaughlin, I will not argue that the girls in question should be permitted to wear bracelets with the word "boobies" on them.  No question asked about that.  In the USA, that right is guaranteed.  Personally, if girls want to dye their hair chartreuse and wear bikinis to school, so be it. I'll go to bat for them to have the right to do so.  However, Judge McLaughlin, you are wrong when you say the bracelets themselves "raise awareness of breast cancer" and "reduce the stigma of discussing breast health."

For starters, unless a young person has been in a coma his or her entire life, by high school age (if not most probably before), he or she is "aware" of breast cancer.  (I'll save the whole discussion asking what awareness even means for a future entry.)  Come on, Judge.  One in eight women in the USA (although I've also seen in places that it's now 1 in 7), or just slightly over 12% of the female population will develop breast cancer at some point in their lives.  After all, breast cancer is the most common cancer in women in the USA, according to medicinenet. There's an entire pink month devoted to breast cancer.  There are pink ribbon barbies. People are aware of breast cancer.

Furthermore, kids these days certainly don't need to use words like "boobies" if we want them to take breast health seriously.  Parents don't encourage teens to take necessary medicines by pretending the spoon is an airplane.  Doctors don't look in teens' ears and pretend to find hidden toys during exams.  And teens don't need to be encouraged to "feel [their] boobies" or "save the ta-tas" or to discuss "boobie health."

We don't say "willie" and "ya-ya" when we discuss reproductive health.  We say "penis" and "vagina." We talk about "greater than" and "less than" signs not "Mr. Alligator chomping" with young adults.
We say "obtuse and acute triangles" instead of "fat and ice cream cone triangles."
I think we can say breast.

So, Judge Mary McLaughlin, stick to First Amendment rights and stop trivializing us all.  Reality is a bitch, but it's also so much more than boobies and bracelets.

Thought for the Day: 5/7/11

Anger is just a demand for change, a passionate wish for things to be different.
          Rachel Naomi Remen

Anger is a great force. If you control it, it can be transmuted into a power which can move the whole world.
          Sri Swami Sivananda

Let us not look back in anger or forward in fear, but around in awareness.
          James Thurber

Do not go gentle into that good nightRage, rage against the dying of the light
          Dylan Thomas

Big Decisions

I've been kicking around a lot of ideas lately, many concerning my blog, many concerning where I go now regarding life, treatment, the future.  I've composed numerous entries in my head; however, inertia and the end of the semester have really done a job on getting anything posted here.

To start things off, for those of you not following along on Facebook, I'm doing much better psychologically.  Mostly.  I'm feeling like that little dip into depression was caused by anesthesia and forgetting to take my Lexapro for a few days.  Not something I want to experience again.  The whole two surgeries this past academic year, over the dark months nonetheless, has rather messed up my self control, especially regarding eating. I've been indulging in more food in general and more comfort food in specific.  Add to that some physical limitations, such as problems with my heels and being forced to NOT do cardio for periods of time and just crappy weather, I've rather porked out over the winter.  I've been doing 4 days a week of exercise classes, but that's certainly not the same as doing classes plus running.  When I switched out my cold weather with my warm weather clothes, I was really disappointed to discover that I can't even zip some of my pants.  So if you see me wearing the same clothes over and over this season, just ignore it.

Also for those of you not following along on Facebook, I have decided to go back into treatment starting next week.  When I talk with people and when I do research, I get mixed results as to whether this is chemotherapy or not.  The makers of the drug, the nurses at the specialty pharmacy I deal with, and much online literature calls it chemotherapy.  My onco nurse doesn't refer to it as such.  The drug itself is Tykerb.  And I'll be taking it off-label. So if you read that Tykerb is used for advanced, metastatic breast cancer, which I do not have (that I know of).  Although functioning in a chemically different way, Tykerb functions very similarly to herceptin, which I was infused with for over a year.  Herceptin "attacks" or "blocks" the protein that the type of cancer I have expresses.  Herceptin is a large molecule.  Tykerb has a small molecular structure and invades cancer cells and also is effective against two types of proteins whereas Herceptin is only effective against one.  Tykerb also crosses the blood-brain barrier (BBB) and Herceptin doesn't.  Normally, Tykerb is taken with two other drugs, which I won't take because I do not have advanced disease.  Most of what is written about Tykerb is written with the assumption that it is taken with one of these two drugs.

This has been a difficult decision.  Initially, when I expected my insurance to deny me coverage, I was all over taking Tykerb (it's a pill, by the way...or rather 4-6 pills a day.  I'll be taking 4.) .  Tykerb is expensive, and as I said earlier, I am taking it off-label.  Another friend of mine who has the same health insurance plan was denied coverage for Tykerb a year ago.  I've seen it quoted at anywhere from $3K-$6K/month.  Assuming that I'd be denied, it was easy for me to agree to try.  Really, I had not decision to make.  My insurance would make it for me.  Then, I got a phone call saying that my insurance would cover it, but that my co-pay would be $2K a month.  At that point, it was easy for me to be indignant and to say that I would take it but that I was unable to afford to take it, and I could then rant about death panels and get on my high horse about the need for health care reform.  And, although I was concerned over my longevity in the face of not taking it, yet it was good.  The decision, ultimately, was out of my hands.  And if I got a recurrence, I could blame my insurance company and the Republicans who blocked a decent (or any, really) health care plan.

Then, out of the blue, while sitting in the Walmart parking lot with Amy, I got a phone call.  Some odd woman was telling me that my insurance did blah blah blah and my co-pay was going to be $100 a month and how did I want to pay for that this month?  It was surreal.  I paid by credit card, and she told me that the Tykerb would be delivered in two days.

So, my hasty "yes, I'll take it" without really investigating, since I wasn't really going to take it any way, suddenly became a reality and I new very little about it, other than how it worked, and that it was some serious stuff because in saying "yes, deliver it," I suddenly had to to have two 20 or more minute long discussions on the phone with nurses, an order for blood work, and a book was delivered to my home detailing what side effects to expect and how to deal with them.

Side effects.  Do I have to?  Really?  For starters, it can cause fatal liver failure.  Sure it can.  Like all chemo, it's toxic (by definition, really).  It can also cause congestive heart failure (probably reversible, as if that's a comfort, given that I watched my mom die for chf).  It can also cause lung problems (and to be honest, I've just been to freaked to find out about those).  All of these problems are found in a small percentage of patients, and my doctor doesn't think I'm at risk.  Yet...

hand/foot syndrome, which I hear is a horrible experience--redness, swelling, peeling, sometimes blistering on the palms of the hands and soles of the feet (my friend Scott has experienced this recently and it just doesn't sound fun or like something I would tolerate with grace).  On the bright side, hand-foot syndrome, according to my onco nurse, seems to only happen with the addition of one of the other drugs I won't be taking, exactly the drug that Scott is taking.  So, I'm hopeful.  I have enough pain in my feet already (more about that in another post, as it seems to not be a cancer related pain but perhaps plantar fasciitis).

Tomorrow, then, I'm off to the lab for my blood work in the morning.  Then, sometime between then and Sunday evening, I need to discuss this all with boys 2 and 3 (boy 1 is in the loop), and Sunday when I go to bed, I will down the handful of large pills and be on my merry way.  I've committed to the summer.  All I'm doing this summer is one week of scoring AP exams in June, teaching one class in July (a total of 7 classes and 4 faculty meetings), and taking two courses independent study myself.  I'll reassess in August and decide if I'm going to stick it out through fall semester.  I'll reassess in December if I'm going to finish out the year of treatment.

At least my hair won't fall out.

My second decision lately is that I need to do something about this blog.  What, though, I'm not sure.  Look for changes in the future.

Update to previous Addendum...

I'm doing better.  Still pretty blah, but overall better.  As far as the procedure goes, I have no more discomfort to speak of.  There's a tightness, almost like the feeling of a bra, but all in all, rarely do I have any real discomfort any more.

Psychologically, I'm doing better.  I realized when it was refill time, that I had more Lexapro left than I should, so I guess I kind of forgot to take some after surgery, and therefore crashed pretty hard in that second week. 

However, I'm also noticing some disturbing symptoms in my left arm, my radiated side.  It's a little swollen, but there's also a tingling and feeling of discomfort.  I've slacked off on wearing my compression sleeves since the surgery, and I'll start being more diligent about that this week, but I have noticed it in the past when I'm wearing my sleeve, too.  The swelling I can trace directly to smashing the back of my hand on the edge of a piece of furniture while playing Dance Central.  As the bruise has faded, the puffiness has gone down.

However, as much fun as I've had choosing sleeves, and as much as I didn't mind wearing them last year, I really don't like it now.  At this point, my hair has grown back.  If you didn't know me, you'd never know that I'm a "survivor."  And the sleeve is like a neon sign that says, "Hey, something's not quite right with this chick."   Not only does my body not feel like my body, not only does my mental state not feel like me, not only do people who know me look at me differently, but dagnabbit, strangers do too.  And it is a neon sign, like being obviously pregnant, that encourages people to just get into my business, like the elderly gentleman who approached me at the community center one day or the woman who hounds me there and thinks she's my best buddy because she, too, had cancer.  My sleeve was what prompted her to come up and talk to me, and now I can't get rid of her.

It's only recently that these things have bothered me.  I don't know why they do.  And I don't hold it against these people.  This is clearly MY issue, not their issue.  I just want to blend.  I want to be the wallflower I enjoy being.

I didn't get to see Dr. Mo for my appointment.  She had to reschedule.  I see her this coming week.  Then I imagine the rounds of medical tests will start.  Since I've met my co-insurance and deductibles for the year, I guess we might as well throw a few extras in there for good measure.  After all, they'll be free.

Thanks for everyone's concern.  I think getting back to work, having a reason to get out of the house, having some purpose for every day has been really good for me.  Who would have thought that teaching would keep me sane?  Generally, I feel it's the other way around....