Saturday, December 03, 2011

You need to read this!

I tried to cut it down and make it shorter, but there were so few words that felt gratuitous.  :)

"There you are, and you suddenly realize that you are spending your whole life just barely getting by.  You keep up a good front.  You manage to make ends meet somehow and look okay from the outside.  But those periods of desperation, those times when you feel everything caving in on you- you keep those to yourself.  You are a mess, and you know it.  But you hide it beautifully.  Meanwhile, way down under all of that, you just know that there has to be some other way to live, a better way to look at the world, a way to touch life more fully.  You click into it by chance now and then: you get a good job.  You fall in love.  Life takes on a richness and clarity that makes all the bad times and humdrum fade away.  The whole texture of your experience changes and you say to yourself, "Okay, now I've made it; now I will be happy."  But then that fades too, like smoke in the wind.  You are left with just a memory- that, and the vague awareness that something is wrong. 

You feel that there really is a whole other realm of depth and sensitivity available in life; somehow, you are just not seeing it.  You wind up feeling cut off.  You feel insulated from the sweetness of experience by some sort of sensory cotton.  You are not really touching life.  You are not "making it" again.  Then even that vague awareness fades away, and you are back to the same old reality.  The world looks like the usual foul place.  It is an emotional roller coaster, and you spend a lot of your time down at the bottom of the ramp, yearning for the heights. 

So what is wrong with you? Are you a freak? No. You are just human.  And you suffer from the same malady that infects every human being.  It is a monster inside all of us, and it has many arms: chronic tension, lack of genuine compassion for others, including the people closest to you, blocked up feelings and emotional deadness- many, many arms.  None of us is entirely free from it.  We may deny it.  We try to suppress it. We build a whole culture around hiding from it, pretending it is not there, and distracting ourselves with goals, projects, and concerns about status.  But it never goes away.  It is a constant undercurrent in every thought and every perception, a little voice in the back of the mind that keeps saying, "Not good enough yet.  Need to have more.  Have to make it better.  Have to be better.  It is a monster, a monster that manifests everywhere in subtle forms.  
The direct result of all this lunacy is a perpetual treadmill race to nowhere, endlessly ignoring 90 percent of our experience.  Then we wonder why life tastes so flat.  In the final analysis this system does not work. 
Sounds pretty bleak, doesn't it?  Luckily, it's not- not at all.  It only sounds bleak when you view it from the ordinary mental perspective, the very perspective at which the treadmill mechanism operates.  Underneath lies another perspective, a completely different way to look at the universe.  It is a level of function in which the mind does not try to freeze time, does not grasp onto our experience as it flows by, and does not try to block things out and ignore them.  It is a level of experience beyond good and bad, beyond pleasure and pain.  It is a lovely way to perceive the world, and it is a learn-able skill.  It is not easy, but it can be learned." 

Mindfulness in Plain English: 20th Anniversary Edition 

Sunday, November 27, 2011

Medical Update

So, let me start by telling you that this post will talk a lot about my uterus.  Consider yourself warned.  :)
Let me try and sum up what's been going on in as short a post as possible.  I've typed this out several times, and it's been excruciatingly long.  There's no point in anyone having to read that much about my uterus.

During Interferon, I went through a forced menopause, and a little less than a year after finishing Interferon, my cycle came back in a blaze of glory.  Since then, I've had an ongoing increase in pain in my abdomen and back each month, sometimes debilitating fatigue, and increased swelling both in my leg and in my abdomen- with other symptoms increasing as well.  Because my brother may be reading this, I'll spare you the gory details, but if you'd like to know them, I'll be happy to share them via email.  You're welcome.  :)
the sonogram set-up

Anyway, my GP has been really awesome about acknowledging these complaints, and I've had a couple of saliva tests that showed that I was producing barely any testosterone or progesterone, so I have a Rx for topical doses of those.  The fatigue has gotten better overall, but can still be overwhelming at times, but at least some of the symptoms have subsided, like muscle cramps at night and inability to sleep.

I call this instrument "the monster"
That, believe it or not, is the short version of that story.  It's been 5 years of struggling with these, and I have been QUITE the squeaky wheel.  That led to me recently getting referred to some specialists, and I'm expecting more info from them soon.  Both of them were concerned about me being on the hormones, saying the side effects are terrible for you, but I haven't been able to find any research against it.  Do any of you know why they say this is so bad?  My experience with it has been very mild. One also asked about me considering getting on birth control pills.  Everything I've read on this says its a "no" when you have a history of melanoma, but she's saying that the research I'm reading is outdated.  Any of you have any input on that?

Other good news is that the pain may be caused by fibroids.  I had a sonogram (ouch) and boy did that suck.  I was in pain from swelling for the 2 days afterward.  I'm back to normal now, and am waiting for results, but thrilled that we may be able to figure out what the problem is.  There has been a mention of a possible hysterectomy in the future, too.

Sorry uterus, but you gotta go.

The other bit of news is that I've scheduled my cancer scans for spring break.  The GP has been insistent on me getting another PET, just to make sure that everything is on the up and up.  I get it.  I mean, it's been several years since I've had them done.
When I last talked to my onco, he asked me what I wanted to do about scans, and I told him pretty much flat out that I wanted to peace out and never be in a hospital ever again.  He was sympathetic to my sentiment,
and told me to take some time to decide how I wanted to handle things.  After months of thought, I was just kinda over it.

Dr. Mark Walberg, my oncologist
Cancer treatment options and follow up are very personal decisions.  I would never want to influence anyone else's thoughts on how to deal with them, but for me, the thought of cancer recurring just ruled my life.  After my last surgery, I just needed to feel what it was like to be normal again, in the way that I didn't let melanoma rule my every thought.  I needed to get away from hospitals and doctors and all of that, and I needed to get my life back.  I took years off from getting scans, and now that I'm back to seeing my oncologist and they're scheduled, I feel really fine with that.  A peacefulness I've granted myself by giving myself time to heal.

And Mr. Mark Wahlberg, who I wish was my oncologist
 That's not to say I wasn't completely freaked out when I went back to my oncologist's office.  I totally thought I had this down and it was going to be no problem, but walking in I was first hit by the smell- which I can't even really define (heparin, maybe?)- and was thrown back into the memory of what it's like to be a cancer patient.  I became almost immediately nauseous, and had to talk myself out of that.  But seeing a lot of people who were so similar to where I once was.... it was eye opening.  Because it made me realize how much I had just decided not to think about, and how much I needed to face it, I guess.  It's just such a sucky situation, to put it very mildly, to be drugged up because you can barely stand the side effects, and to be missing out on your own life because you're trying so desperately to save it.  Walking in there, I suddenly remembered vividly watching my hair fall out every time I took it out of a ponytail, and how cold my head was all that winter.  I remembered being so out of it but trying to hang in there for normal conversations.  I remembered the overall dread of whatever next dr.'s appointment I had, and how I was trying to just keep a fairly positive attitude.  There were lots of things I guess I wanted to forget that day, and many of them came flooding back.  I sat in the parking lot and cried afterward, mainly because I allowed myself a moment of grief for all that I, and so many other people, have been through.  And then again I cried--- as you all already know--- at the thought of having to do it again.

I feel ok about it now, a week or so later.  I feel okay but a little weary from the experience.  I know that my cancer peeps are still going through so much of this, and I want you to know I pray for you every single day.  I know that even some people close to me are going through this, and I send you loving vibes so often.  And for myself, I am being forgiving for what I chose to ignore, and supportive of what may come.  I am damaged and flawed and overall a completely hot mess, it is true.   And I aim to be the epitome of mindfulness, no matter how far I am away from it today.  For now, I am happy for every little thing in my life, and how lucky I have been.  You have no idea how incredibly lucky I am.

I'll keep you updated on the results of tests.  Blessings to everyone!


Random, but cool

You gotta check this out.

By clicking on the body part, you get a list of exercises.  Great for workout ideas.  Or for a deterring making those bacon chocolate chip cookies you saw the recipe for.   mmmmmmmmmmmm


Just a Perfect Day

Today is the first really cold day of this year so far, and we're all coping by sleeping our Sunday away.  :)

Days like this, it's really hard to resist the urge to nap.

This is the miraculous Kitty.  Kitty is really a "he," but reminds me of the a famous diva, who also happens to be a drag queen, and so I've decided she's the same.  So I guess "Kitty" is actually her stage name.

She's also the neighborhood stray, who finds residence during the cold months in our humble abode. Remember that post a few weeks back about missing her?  Well, she must've been trapped in a building or something.  She showed up after being gone for about 3 weeks, and she was stick thin.  We've fattened her up, and she's back to ruling the roost.  Can't you just tell by the photo what a complete queen she is?

This is Tabby.  She's a neighborhood feral cat that ran in our door when it was left ajar a moment too long last winter during Snowmageddon.  She is super duper sweet, but also super duper skittish.  We can't get close enough to touch her, but we feed her and let her in when it's cold.  That's the arrangement.  :)

Can you see her in the photo?  She cuddles up in this old car seat we keep in our storage area on cold days like this.

And, of course, who could forget Bear? in her super expensive cush bed.  She's the palace princess, complete with monogrammed pillow.

I'm bundled up, sans make-up, sipping hot coco and hoping all of you are enjoying your Sunday, too!


Tuesday, October 25, 2011


I really miss her.  :(

Monday, October 10, 2011


In many ways, I'm two people.  If you're a teacher, you probably understand this.  My "work self" wears khaki pants and some drab polo shirt almost every day.  I'm fun but super clean, and always busy.  My "home self" is always showing off my cleavage and tattoo; I hate khakis but love jeans and heavy eyeliner.  Let's just say I'm not uber-clean when I'm away from school, and I spend most of my time relaxing in different ways.

Then there's the pre-cancer me: a young, fun, carefree party girl. I promised myself I'd never setttle down, and although I "loved" everyone, I really made it a point to not care too much about anyone (including myself).  The me now is a little different- I'm definitely not as young, not as care-free, but I work hard trying to be.  I'm just too old to party like that anymore, and don't really have the desire to most of the time.  I'm lucky enough to say that I'm in a relationship that is so good I only dreamed it could exist.  And although I'm still very careful who I bring into the circle of trust, the people in my life have a very different meaning to me now.

Despite all that, there are things that overlap all of these "me's:" the main one being I am flawed.  If you would've told me at 20 that at 36 I'd still be trying to break the same habits, I probably would've laughed.  At so many points in my life I was a model of discipline, and yet, for most of my life, discipline has escaped me.  I had hoped that age would bring wisdom, and perhaps more age will, but for now, I'm giving up on the guilt.  That's not to say that I won't keep working towards that me that I know I can be, but I'm sick and tired of being sick and tired about it.  And I'm all about that whole "always in progress, always complete" thing.  I'll probably have to remind myself to redo this giving up thing every month, but today I don't even care.  Seriously.

So this may seem like a downer of a post, but it's really not.  It's awesome.  Being flawed is awesome.  You should try it.  :)


Saturday, September 03, 2011

This is just the best

A blog "written" by Suri Cruise in which she continually dishes it out  to other Hollywood children.

Thank me later.


Friday, August 12, 2011

I totally love this already

My dear friend Jess told me to check out the trailer for "50/50," which I had not heard of until yesterday.  I must say there aren't many parts of my life that I thought would make a good movie, but my friends and I talk all the time about how someone needs to sort of show everyone what it's like when  young person, totally unequipped to deal with even normal every day life, gets diagnosed with cancer.  It appears someone finally has.  :)

Can't wait to see it on September 30th!


Saturday, July 30, 2011

If 3 bloggers meet for dinner and no one takes a picture, did it really happen?

I've received comments and emails lately from blog readers who have really warmed my heart.  Thanks so much for all the support and love.  And thank you for understanding that this blog is all over the place- from my job, to cancer to roller derby, to fashion and make-up, to relationship stuff, to Buddhism to yoga to advocacy- I'm not just consumed by one thing on this blog.  So if you've hung in there with me and you still like this blog, thanks for being you!  And now I have some other tasty tidbits for you. :)

First, I'd like to credit that joke to , a blogger I've just found this week.  She's pretty fabulous.

Second, if you are a blogger, you have to check out this awesome post on How to Write a Great Blog Post, Part 3 by Elissa.  She is also pretty fabulous. 

Third, you have to meet Erin, who rocks Buffalo Exchange t-shirts like a girl after my own heart.  She's is pretty fabulous as well. 

And fourth, I'd like to use the first through third points to seg-way into the fact that I am so stoked I found three awesome blogs this week, who just happen to belong to Tina, Erin and Elissa.  And trust me- you'd need to be mad at me if I didn't share these.  Here's the kick, though: these three girls all know each other!  How cute is that!?!

T Minus, T Plus: A Plus Size Professional Bringing a Splash of Color to a Sea of Black Suits

Work With What You've Got

Dress With Courage


Friday, July 22, 2011

Brick by Brick

You think you have it so hard
You've got a test next week, your best friend is being a b word, there's some repair you need for your car that costs $1100, your cat is sick, your boss is a prick, your tooth has a giant cavity, and you hate your ex-boyfriend.  Life is terrible.  You want to die. 

And you go on like this for years.  Years.  Going from one crisis to the next. Then one day you get a phone call, and you have cancer.  Bam.  Like a hit from a baseball bat to the head.  Cancer.  Everything spins for a minute.  The world seems to jolt to a stop. 

 Everything changes.  No more "what am I going to do about  my econ grade?" Now it's become "what am I going to do about being dead?"   It sucks.  It sucks so bad, that unless you've been through it, you can't even begin to fathom the feeling.  It hollows you out in a split second.  It's like being struck by lightning. 

But you know yourself.  And you don't quit.  So you say, you know what? I can do this.  I can beat this.  I have no doubt I can beat this.  And so you do the treatment.  You have a 50% chance of living for 5 more years, so you decide to fight like hell.  You have no idea what hell will be like.  

The treatment lasts for one year, and the side effects are brutal.  You get a rash.  You get GERD.  You get IBS.  You feel like someone is continually hitting you in the stomach for about a year.  Your bones ache like they are being frozen within your skin.  You get strange shooting pains all over your body at random times for no apparent reason.  You are so tired, you fall asleep standing up.  You are so tired, you crap your pants- more than once.  You are so sick that you have to decide what hurts worse- hunger pains or the pain from eating.  You are so sick that your esophagus bleeds.  Your mouth is filled with yeasty pustules.  You pass out in the shower.  You still have the rash.  You have a fever almost every single day for an entire year.  You feel every moment like you'll collapse if you don't lie down.  You miss important engagements- graduations, concerts, parties, dinners- because you are so sick.  You get to the point where you can't even run simple errands- you have to take a wheelchair everywhere.  You sleep 70% of every day and night.  You wake up to realize you've missed whole days.  The hormones make you crazy, and when you are awake, everything makes you cry.  You gain 50 pounds.  You cannot catch an effing break to save your life.  You have no control over anything anymore.  You have been stripped down to your bare existence.  You hate your life, and you want to die.  And this time for real.  

In this time, when, to no fault of your own, you have reached your absolute low point, mentally and physically, you look around you for love and support and reassurance- and you feel so small and frail and alone.  You are alone because, through all this, you not only lost yourself, but you lost so many others.  The first was your close aunt- who, in her own grieving process, lashed out at you for the mistakes that you'd made in the past.  Why didn't you take better care of yourself?  You could've prevented this!  She has no idea how to deal with what is happening to you and can't bear to watch it.  Her anger at the situation overfills her heart and she thrashes it around wildly.  You are in the direct path.  She cuts you out of her life. 

Your friends from adulthood try to hang in there, but when they've never seen death so close before, they begin to question their own immortality.  This ish ain't pretty if you've never seen it before, and one by one, memory by memory, lonely tiny morsels of trust left in your once overflowing life, the friends become consumed with their own lives- after all, yours IS the only one that's stopped- and they disappear.  They all have bills to pay, kids to raise, families to tend. But what is most striking to you are the mistakes you made, whatever it is that you must have done  to make all these friends disappear.  Everyone is so uncomfortable around you.  You are overwhelmed with shame.   

You cling to those last few people.  One of your caregivers is an old friend from way back.  You lean on her.  She thinks that you should be handling the illness one way, and you think you should be handling it another.  Tempers flare.  Words flail like sharp weapons- and it becomes a game of who can cut the other deeper.  It's like a bomb went off inside you both, and feels like the worst breakup ever- even though it's not even with a guy.  You feel like a limb has been severed.  You both are miserable, but neither will admit it.  A friendship 20 years old, gone like the snap of your fingers. 

Because you're sick of it!  You're sick of it all!  To have to endure everything, and then, in the midst of it bare the psychoses of those around you? To have to carry their inadequacies as they dump them on you for being sick?  You're the cancer patient!  These are their faults, not yours! Why are they lashing out at you, making your life even worse?  Shouldn't I be the one being taken care of here?

What is it going to take?!?  It's all been ripped from your clutches- your life, your health, your body, your future, you friends, your dreams, your time, your energy, your job.  It has even taken your personality. You are shaken to your core.  You are a naked shell compared to what you once were.  You are Job.  You look around you and it is a desolate wasteland of nothingness that surrounds you now.  How did you even get here?  A year ago you never would've believed that this would be your life now.  You were so naive.  The destruction from your life has created a huge void.  Is this rock bottom?  Please tell me this is rock bottom.  Please tell me things get better from here.  

There is nothing left to do but rebuild.  You discover that the whole time you thought you were alone, there was a prince right beside you.  He was there holding you up when you weren't looking, all along.  The cancer seems to be gone.  You can allow your body to begin mending.  It will take years, and the fatigue and pain never fully subside.  You try to figure out who you are now.  You try to build your old life again, but everything is different.  Everyday is a brick. Brick by brick, though, you make a new life.  It's not as carefree as it was, but you are alive.  Things are not easy, brick by brick.  Slowly you rebuild.  

Most importantly you find, you are not alone.  You find a community of other survivors.  Healing is not easy, and many of the symptoms still exist.  Nothing is the same as it was, your body has changed, your mind is not the same, your personality is different.  But you have learned to accept that.  Things are ok.  Then things are good.  There are still very few true friends, and only one or two people you trust anymore, but slowly life becomes great again.  The bricks begin to build a structure, which is still wobbly most of the time.  Brick by brick, it becomes stronger.   There are cancer scares, and sickness, death and disasters.  And finally, after a long, hard road, when you realize that everything is still in shambles, you sigh to yourself and decide to just be happy for the little there is.  It is not much, but it is awesome.  Life has begun again.  It has been six years, and life is starting to look like a life I like to live again.  Thank you, God.  

Friday, July 15, 2011

3 Great Things

I just wanted to share some hot new finds. 

#1 is a site I found via Facebook (believe it or not). I kinda went off on a tangent on there the other day.  I guess I don't know how to deal with it when I see a mole that looks suspicious to me or when my friends post (over and over) "OMG I got so sunburned today!" or "I love my new tanning bed place!" I mean, come on people.  All I'm asking is wear sunblock and stay away from tanning beds.  (I mean, any advice, btw?) Anywho, speaking of tangents..... lol....what I was saying was.... that I found this awesome site called Melanoma Girl. She's got a well-designed website and an uplifting, amazing attitude to boot.  Her t-shirt designs are pretty stellar too.  You should definitely check it out. Cuz it's "pretty cool!" (see video)

#2- I got an email from Brenda Becker for MelApp and she informed me that there's a new iPhone app called- appropriately enough called MelApp.  According to Brenda, 
"MelApp is an early detection mobile app that uses the iPhone’s camera coupled with image diagnostics to assess if users’ moles and freckles are low to high risk of melanoma. Highly sophisticated patent protected mathematical algorithms and image-based pattern recognition technology lets MelApp analyze a user’s uploaded image of their mole or freckle, using an image database licensed from Johns Hopkins University Medical Center. Within seconds MelApp will provide a risk analysis of the uploaded picture being a melanoma."
Ok, not the best named idea out there, but I feel like this is pret legit.  And so high tech! It's a very sheek looking app, very functional, pretty intuitive design.  All in all, I give it a thumbs up.  Check it out at 
and .

#3- You have to know about!  Holy shit.  Truly great cancer design going on there.  Totally seriously!

Great to be back after a full month taking off!


Sunday, July 10, 2011

Separate Vacations

Every few years, Bobby and I do separate vacations.  This actually started sort of as an argument the first time. Hilarious.  It happened when I, in one of my not-so-noble moments, booked a vacay without Bobby.  In retaliation, he did the same, and two weeks later, when we were both back from our separate trips, we were better for the experience.  We were both reminded of what independence feels like, happy with ourselves, and more appreciative of our love for each other.  I don't know, but I'm guessing that separate vacations either make you love what you have or realize that you need to make a change.  And for me, it also makes me really evaluate what I love and how I would spend my time if I wasn't thinking so much about someone else, which is not only good for me, but good for the relationship.

Getting to watch tons of bad tv completely guilt free isn't too shabby either. lol

Yes, that's right: I'm on a stay-cation.  B went off to LA in pursuit of all kinds of worldly comedian knowledge, and I decided to kick it right here at the casa.  The warehome.  The old homestead.  It's day 3 today, which I have designated "cleaning day." Day 4 will be "art day."  These days were preceded by "sit on the couch day" and "healthy indulgence day."

Both  day 1 and day 2 were allotted extra time for bad tv.  This included The League (my fave), Southpark (of course), Jersey Shore (eek!), Bones, Psych, The Unusuals, Celebrity Ghost Stories (I am such a sucker for these!), Archer, along with lots of Food Network, and also Samantha Who?, which I just now found.
Yes, Samantha Who? is a bit cheesy, but I just love the idea of waking up and being completely wiped clean from the person you were the day before.  On the show, she has retrograde amnesia, and wakes in the hospital to find that she has no memory of her life before a hit and run accident 8 days before.  So she sets out to find out who she is, and progressively realizes that she was a horrible human being.   The funniest part is when she asks people to describe her to herself.

Pretty interesting, right?  Can you imagine waking up tomorrow and having to ask people what you are like?  What are your favorite foods?  What is your job?  Do you like your job? Do you like yourself?  Do you like your family?  Your friends?  Your life?

To just add to that, ask yourself this- if you asked the people closest to you WHO you are, would they even know? Dr. Phil has this thing he calls a personal truth.  I'm not a big Dr. Phil fan, but I love what his says about it.

"Decide what your personal truth is. Every single one of us has one — something we believe about ourselves when nobody else is watching. Our personal truth is what we really say to ourselves when our social mask is off. Once you decide what your personal truth is, then you'll be less vulnerable to what others say.  Personal truth is so important bc I think we generate the results in our life that we believe we deserve.  If you have a damaged personal truth, you generate the results that match that.  When we grow up, people write on the slate of who we are.  People like parents write on our slate.  But the most tragic thing of all is when we pick up the pen and start writing and we write the same things they did."

So there's a little something for you to chew on all week: who are you, and do you like who you've become?  Would you like a description of yourself?

Rest assured that am asking myself these questions, too.  It's what I'm focusing on this week, too.  I'm focusing on the part of the description that I want to change.

It's a great stay-cation!  Namaste!


Thursday, June 23, 2011

Holy Moly!

Daily aspirin may protect against melanoma

Long-term use cut risk of deadly skin cancer by almost half, study finds

By Linda Carroll contributor 
updated 6/23/2011 8:58:48 AM ET

An aspirin a day may keep melanoma at bay, a new study suggests.
After scrutinizing the medical records of 1,000 people, an international team of researchers have determined that the risk of melanoma was cut by almost half when people took a daily dose of aspirin for at least five years. 
“Our data at least support the hypothesis that long-term steady aspirin use has an effect,” said study co-author Dr. Robert Stern, a professor of dermatology at Harvard Medical School and chief of dermatology at Beth Israel Deaconess Hospital in Boston.
You gotta read this!!!!


Monday, June 20, 2011

Dear 16 Year Old Me, Dear Someone Else---

I've had a ton of people send me this link on Facebook, Twitter and even in comments of this blog.  It's definitely worth watching, and I tear up every time I see it.  I wish I had seen it at 16! But I can still share now with people that don't know.  Please repost or send to anyone 16, or anyone who has ever been 16.  :)

Sunday, April 24, 2011

Are you exercising your appreciation muscle?

Probably my biggest goal for myself is to accept the things I cannot change.  On one hand, I must give myself credit for how far I have come, and on the other hand, I have to think about how often I get angry and up in arms about the things I cannot change.  Always in progress, always complete.

I'm reminded a great deal of the four noble truths: the very nature of life is suffering, suffering is caused to our attachments- and probably attachments to how we think things "should be."  There is a way to extinguish the suffering, and the suffering and pain can even lead you to the love and liberation that you know is possible.

Pretty awesome to think of that.  So I'm going to present a challenge to you that I have already presented to myself.  For today, be your own best friend and say all the compassionate and kind things to yourself that you wish others would say.  In doing so, the loving kindness you create will help you to accept the things you cannot change.
As Jill Bolte Taylor said, enlightenment is a thought away.  And it is your choice.  Love that!


Sunday, April 03, 2011

Exciting Stuff!

New Melanoma Treatment Approved by FDA

WASHINGTON, D.C.—Thirteen years of waiting is now over for melanoma patients. That’s how long it’s been since the last therapy became available to treat the most lethal form of skin cancer – melanoma.  The FDA today announced approval of Yervoy, an immunotherapy treatment for advanced melanoma.   
The drug will be used to treat melanoma patients whose cancer has spread to other parts of the body.  It is the first approved drug that has extended the lives of patients with advanced melanoma. 
“This is a critical breakthrough for advanced-stage melanoma patients who have far too few approved treatment options available,” said Timothy J. Turnham, the executive director of the Melanoma Research Foundation (MRF).  “Patients have been waiting for a life-changing innovation like this one and news of the approval has galvanized the patient community.” --- From the Melanoma Research Foundation Press Release

PRINCETON, N.J.--(BUSINESS WIRE)--Bristol-Myers Squibb Company (NYSE: BMY) today announced that the U.S. Food and Drug Administration (FDA) approved YERVOY™ (ipilimumab) 3 mg/kg for the treatment of patients with unresectable (inoperable) or metastatic melanoma. YERVOY is the first and only therapy for unresectable or metastatic melanoma to demonstrate a significant improvement in overall survival based on results from a pivotal randomized, double-blind Phase 3 study.  ----Bristol-Myers Squibb Press Release

Sunday, March 27, 2011

Ups and downs

I remember when my weeks were filled with a different doctor's appointment every day, when my job was to do my treatment and to be at the right waiting room at the right time.  I remember the hours of sitting and thinking, too drugged to read or follow a tv show, too tired to care how the 30 minute fiasco ended.  I remember thinking how lucky I'd been just to be able to walk around at one point in my life NOT attached to an i.v. pole, and how mad I was at myself that I had not appreciated it.  
I remember the exhaustion of just making the decision to get out of bed that day, the shooting pain in my heels as I walked to the bathroom each morning.  I remember the nausea and the fatigue and the hell I thought I'd never get through.  I remember a year of treatment turning into 3 years of recovery.

Five years later, I have a job that I (mostly) love, where I spend way too much time.  I work out almost every day again, have hobbies, stay too busy, paint, read, travel, see my friends often, and have cocktails over lots of laughs.  Daily, I am finding myself doing things I used to miss doing- running, dancing, shopping, playing, wearing awesome clothes, and going out with friends.

And so to see my friends with my same disease go through hell, retreat back to a life of endless scripts and pharmacies, tests, phone calls, exams and treatments, decisions about chemo and surgery and radiation and clinical trials- it's sometimes too much to have to process.

And so I dedicate this to my peeps still going through it all and those that I don't even know who are fighting the same battle, too.  I lift you up with waves of peaceful thoughts.  I send healing vibes your way.

And I cherish my seconds, my minutes, and my days of freedom in honor of you.


Friday, February 25, 2011

Wednesday, February 23, 2011

Building Castles in the Sky

"The hardest thing in life, is letting go of what you thought was real."
~ Author Unknown ~

What do I really want to do with the rest of my life? Live out loud.  Suck the marrow out of life.  To totally think about what new risk I'm going to take every day, to want to live in new situations all the time,  to try new things (which means that I can't just do the old things), to risk making a mistake.  Or mistakes.  (Big ones!)  To be rejected and live through it and realize it's not that big of a deal.   To realize where I really am, without any fibs or guilt or rose-colored perceptions.  And to realize, as I'm doing it, that I had been making mistakes and learning new things the whole time.  To be free to fail. And to fail!  And be okay with failing! And to embrace every breath-taking moment. 


Sunday, February 13, 2011

Such an Awesome Weekend!

Consisting of...
sleeping most of the day

dinner with girlfriends

Birthday celebration for Bobby

delicious birthday lunch

cat naps

hanging out

and celebrating another year of being with my love!


Wednesday, February 09, 2011

Saying good-bye

I find it so hard to write about my friends that have passed away.  As time has passed since my own cancer diagnosis, I have grown into my way of dealing with these losses, and it is often a very private and guarded process.  After so many losses, its an even sadder affair.  I'm sure I've mentioned this before, but since I started this blog I've lost something like 30 friends.  It's enough to leave you speechless.
But I must say I feel like I should tell you about how great they were.

Did you know JB?  He's a fellow melanoma survivor that passed away on February 3rd.  One of the things that was awesome about JB was that he could make you see what he was seeing and (almost) feel what he was feeling.  Here's a short example from one of his post this last summer:

"Today, I was given my discharge paperwork from the hospital. Discharge from the hospital is almost always an enjoyable time for me; it means that which brought me into the medical system has been addressed and that my doctors feel that I am ready to recover further, and better at home. It is generally the time for IV lines to be pulled out of veins and tape pulled off of itchy flesh; a moment for quick goodbyes to noisy beeping machines, frequent human grunts of pain, odors of cleaning products mixed with urine, as well as grateful nods to the medical staff that have looked after me for days."

He was just really good like that.  There were a million good things about him: his wit, his honesty, the way he wrote about his cat, his infinite humor, the fact that he loved Margaret Cho, his political views, the way he wrote about his partner Jason, the photos he took of food from his garden, his views on science, his sincerity.... I could go on and on and on.  He was just an awesome person, and I felt lucky for knowing him every time we communicated.  

It's strange to me that write this at a stage in my life where I no longer associate death with guilt.  It's quite liberating; and for that, I have to thank Linda.  
I guess the guilt all started with my Dad, who I felt hadn't communicated with me during his illness.  And then I had hesitated to see him when I knew I shouldn't have been hesitating.  And then there was more drama than any trailer park family should ever have at the funeral.  THE FUNERAL.  Are you kidding me.  And blah blah blah, 5 years later and every time someone passed away, I was feeling guilt.  It was like it was the only way to experience it.  

Then Linda got sick, and told me before she got near the end that, no matter what happened through her illness, she knew I wanted to be with her.  And she asked to be buried in the hat I made her. It was like she cleared up all my death-guilt issues right then.  An extraordinary lady indeed.  

When I got up on the morning of the 3rd, I read this quote on Facebook: 
"Old friends pass away, new friends appear.  It is just like the days.  An old day passes, a new day arrives.  The important thing is to make it meaningful: a meaningful friend- or a meaningful day." - His Holiness the Dalai Lama 

I know that's true, but it's just difficult to change sometimes, especially with such good friends. I don't want them to be gone.  

I don't want to think about the fact that they were here one day, and the next they were not.     Part of the process, I guess.  And I must admit in spite of that, I do feel blessed.  The ephemeral nature of life, and friends, makes them all the more valuable.  


Thursday, February 03, 2011

Thursday, January 27, 2011

Dear Blog Commenters,

You are the best.  You need to know this.  Sometimes when I read your comments, my eyes well up with tears, and I think it's because I feel simultaneous: a) loved b) supported and c) perhaps most importantly- understood. I'm having one of those, "the internet has connected me to so many incredible people" moments.  But also one of those, "the friends and loved ones in my lfie are super sweet about following my blog" moments.

I love you for caring enough to comment!


p.s. You rock.

Sunday, January 23, 2011


You don't even have to wait.

Monday, January 17, 2011

Terrifying Yoga Epiphany of the Week

That's right- I am bigger than the life I'm living.

With every happy feeling I get in yoga, I see another area of my life that I need to grow. I've realized that I've been living in a box, trying not to come out for fear of scary stuff happening to me. Scary stuff like what's happened before- scary stuff like failure and judgment and heartbreak and cancer and losing family and loved ones. Scary stuff that seemed to have engulfed me a few years ago.

I remember a time when I had mentioned something to a friend about a crazy incident and she said to me, "You've never said ANYTHING scares you. I thought you were fearless." The rational part of me thought about how ridiculous that was. No one is truly fearless.

But looking back- what a way to live. Fearlessly. I
really remember that day and thinking about being perceived as fearless. And I remember who I was back then. I wasn't afraid to talk to strangers or try new things or show up places that I'd never been before. I had a faith in myself that I could do anything.
Nothing was off limits. I had faith that the thoughts I created in my head about how frightening things could be were way more terrifying than anything I'd actually have to live through.

And that's just not me anymore.

I have been humbled by life, humbled by pain, humbled by my body's limits. Humbled by cancer and the everyday turns of life. And yes, humbled by fear.

A friend's chat message bubble pops up on FB and I panic, thinking to myself, "omg, what am I going to say?" as if it's a job interview and this is my only chance to impress them. I don't drive at night much. I force myself to carry mace. I avoid making relationships because I know how easily they can fall
I see old pictures and wonder what I did to make that Lori go away.

On the other hand, I don't blame myself too badly. It's been a stressful few years. I'm 6 years out of a cancer prognosis that was less than encouraging, and it's only normal for me to need some time to
heal. I've been accused of having PTSD, and I don't doubt that I suffered from that at one point. I feel ok though, like I've grown some, and don't have to live that life of constant fear anymore. When I get a headache, I no longer worry about it being brain mets. (lol) And in the destruction that cancer can bring I realize that relationships can fall apart. Sides that you've never seen to people open up. Things change. In the aftermath of whatever happens, you cling to yourself and you hold on. Primal protective urges take over. People that meant something to you before become ghosts that haunt the spaces they used to fill.

So it's 6 years out, and I realize that I think almost every day about people that are no longer in my life much anymore.

Practicing yoga today, on the exhale of a downward-facing dog, it hit me like a ton of bricks.

It's time to let go.

What is it about letting go that is also so scary? And so sad? I assume it's just the familiar that is hard to let go of. Even if the familiar still sucks.

Today I start a whole new life. People around me tell me "Own it! This is yours!"

I have no idea how to do that, and I say that I'll fake it in the meantime.

"No faking it! You can do this!" they say. There is love in their words.

I don't believe them at all. I have anxiety about even being able to pull off the faking it. I realize that my faith in my ability is almost totally gone.

But maybe that's the point. Maybe this is rock bottom, and I have to
crawl back up from here. Maybe this is where I find myself again and find out that even being so incredibly human, I can succeed.

So today- again, for the millionth time- today is a big, new exciting step.

I've always dreamed of bigger, better things. Now that it's happening, I'm scared as hell.

I think that's ok. :)

I think the point is having enough faith to see if I can do it again. I'm 36 years old, and starting all over. This time, I do it not so fearlessly. I have no idea how to do this.

But I'm still doing it.


I'm Too Young For This!