Jenius

It has been a rough week.  I am now using a wheelchair.  Some days I feel pretty good and have just a little pain, some days it hurts too bad to stand.  I feel confident that by next week I will be out of the wheelchair and able to walk again, at least for a week or so.  Lately I've been expecting this sort of setback very on schedule and just kind of deal with them.  :)  So.... this is what's up.  Physically I suck.  Mentally, I'm much less bummed about it than last week.  At this point, when I AM upset, I really feel more inconvenienced than anything.  But I'm still living my life, and I can still teach, so I'm happy.

I was told last week, by someone that I never expected to be comforted by, "Be patient, God has a plan for you."  I don't know what she means, but it feels really good to hear that.  I don't even believe in the traditional form of God the way that she does, but I do believe that there is a purpose here somewhere.  What if all of this is my destiny?  How could I be mad and argue with my destiny?

I'm happy to be able to do what I can do, I'm blessed by amazing people in my life, the weather has been almost inspiring it's been so beautiful, and TinyBuddha.com says that "You can be who you want to be right now, no matter what your situation looks like." So dammit, I'm going with that.  Just thought you might want to know, since the last time I was on here I was throwing a temper tantrum.  teehee

I'll close with 2 fabulous pics, and 1 fabulous quote.

* 

muchos besos,
-MM

Real Talk

Don't ever tell a kid they aren't sick when they really are.  Don't ever try to convince them that what's really wrong with them is only in their head when they are genuinely suffering.

I say that because I know what happens to kids that go through that-- they end up like me.  And I am a hot mess when it comes to listening to my body signals.

My house was not always the easiest house to grow up in.  Things were pretty spectacular until I was about 9, and let's just say that's when ish got real.  There were drugs, and fights, divorces, lots of men coming in and out of my life, alcohol, jail.  My brother moved out. I was thrown out of the house a few times.  I thought of running away other times.  I stayed with friends and I lived with my grandparents off and on.  There was almost no stability and very little attention being paid to the kids.  The parents were having a hard enough time surviving and taking care of themselves.  And so I learned to be as little a burden as possible.  Never complain; try to stay invisible.  That meant survival.

Fast forward to yesterday (Monday) night. I'm in the middle of making stuffed cabbage casserole, and I feel a twinge in my back.  Hmm, I think. It's probably nothing.

And that's how it works with me.  My first instinct is always "it's probably nothing." I think it's served me well all these years, and I think that positive thinking is a powerful thing.  But post-cancer, in my "new normal," it's just a dusty old habit.  I can't think of any way that it's helping me.  The 48 hours following that twinge I've spent in bed, trying not to move to avoid back pain.

Not that my pain can be predicted-- or sometimes even prevented.  I'll be fine, then within an hour, my leg will be swollen, I start to have pains all through my abdomen, and I'll start to get shooting pain up my back for no apparent reason.  This may last a couple hours, or it might last days.  Then, just as quickly as it came on, it's gone.  Bizarre.


Sometimes, in the midst of pain like this, I give up hope.  I start to believe that there's no use trying to pretend that I'm normal and I can lead a normal life.   I think about quitting my job.  The truth is I let down my coworkers with what has practically become a monthly routine of staying home a few days with pain.  I tell myself to just push through, go to work.... and I'll be fine. I'll probably feel better the more I move around, my head says.  But that is hardly ever the case anymore, and I need to face that reality.  I'm anemic.  My memory suffers.  I have gone from being the top of my class in college to the girl with brain fog that can't remember basic vocabulary.  I'm a mess.  I'll wake up with the same migraine for eight days in a row. My joints and legs hurt, my foot goes numb and I trip over stuff like I'm drunk.  I feel narcoleptic in the afternoon. I'm sometimes exhausted for the whole week.  I ache all over- my shoulders, my neck, my face, everywhere.  My sciatic nerve in my leg sometimes burns from my heel to my back. My pelvic and abdominal pain make sitting painful, and I have shooting pain up my back when I try to bend over.  Am I even capable of having a normal job?  Will all this end with the hysterectomy?  Please say this will end.


I don't even know what the reality is.  What do I change when it's not even something I did?  It's hard not to blame myself when it appears out of no where.  I sometimes think I should go easy and save myself the misery of the pain later, but even resting a lot does little to prevent it.  So I think I should just get as much life as I can out of my good days, because who knows how many of them I will have?  Last week I was definitely tired, with just the regular lymphedema and nerve pain, but nothing I couldn't handle.  I forced myself through the fatigue.  I would take a few sips of Red Bull when I needed to and I made it to every workout.  I worked out 5 days last week!  And I felt amazing. I was even taking it slow, just walking on the treadmill or going easy on the elliptical. I was cooking, eating healthy food, hydrating like there's no tomorrow.  My libido was in full swing.  I was enjoying my workdays.   I had dinner with friends on Friday and even went out and enjoyed myself Saturday night.  It was like I was my old self again.  It felt so good to have it all together.   A normal life with a normal body.


And now this- in bed for two and a half days with back pain that shows up like unwanted in-laws.  These setbacks are never easy, no matter how many times you have them.  Read any cancer survivor's blog and you'll watch them, over and over, take a few steps forward then get shoved all that way back.  Its just how it works.  Tenacity is the key I guess.  I know all the statistics about how likely this is for me to be going through-- I know about interferon and the thyroid, about chronic fatigue and interferon, about autoimmune disease and the thyroid, about melanoma and the thyroid.  Only Bobby and maybe 2 really close friends even know about this stuff, so it's difficult to explain missing work, missing concerts and events, being too tired to do anything.  I'm really sick of having to make excuses or explain.  It's embarrassing and awkward, especially since I have kept so much of this under wraps.   I seem like a total flake.  And dear God, it's been this way for years.

Ugh.  I think I'm just ranting now.  Sorry for the downer of a post.  Things will get better, be brighter.  I am going to hang in there and focus on the blessings-- Bobby and my friends and my family and my students.  I am overwhelming blessed daily by all of them.  And, year after year, things do get better with my body.  I will admit that.

I'm just going to let go and accept that this is the life I'm meant to live.  Thank you, Universe/God, for this life.  Eventually I hope to understand how it is perfect for me.

Lots of love,
-MM

p.s.- Please keep my peeps in your prayers, as they are going through lots of medical procedures right now.  Thanks!

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." 

Bhante Henepola Gunaratana

Mindfulness in Plain English: 20th Anniversary Edition 

Medical Update

So, let me start by telling you that this post will talk a lot about my uterus.  Consider yourself warned.  :)

iheartguts.com

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!

-MM

Random, but cool

You gotta check this out.

http://www.divine.ca/en/fitness-and-nutrition/exercise-finder/c_266/

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

-MM

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.  :)







We don't have heat, so we try and keep warm the best we can.  Days like today, it's too tough to fight the urge to nap.  lol
Bobby is cuddled up on the couch with his snuggie.

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!




-MM

Kitty

I really miss her.  :(

Two

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.  :)

-MM

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.

http://surisburnbook.tumblr.com/

-MM