Saturday, June 12, 2010

Relaxing into the Mystery

Once again, I accept that life is uncertain-that the goal is not to become more certain about anything but to relax more into the mystery of not knowing what will come next.  Elizabeth Lesser

I believe I am relaxing more into the mystery, but I will tell you this is not a straight line progression.  There are ups and downs and degrees and layers and if I tried to give you my latitude and longitude you would not be able to find me.  I'd like to talk about that tonight, the raw side of this thing.

First let me tell you a Shell from Boston messaged today with her confession that she checks my blog a couple times to see if I've posted yet.  I love hearing that.  She asked me how am I doing as in how am I really doing?

I texted back -

OK so cancer effing sucks the big one but I have never felt more loved, connected and awake in my life.  and I never knew how brave I am.  WTF?  This is some heavy scary painful shit u have to do to physically fight it.  I have my moments I just want to say I give.  Then somethin happens and I say OK, one more day.  I'm going to write about that soon.  Just how bad it sucks and yet...

Her great reply was something I needed to be reminded of.

Oh please woman, give up even trying to think of quitting, you seem to be the only one who doesn't realize Deb and surrender don't belong in the same sentence...

I will not surrender the fight, but I have had to surrender that I have very little control in this or the outcome.

Destination Unknown. Hello friend.  Wdygwygafm?

Can I talk about that tonight?  Can I share some of the layers of this thing with you?

I will start with when I look at myself in the mirror, with just jammy bottoms on.  I have no hair.  Just a very slight short stubble, and surprisingly some of it looks very dark compared to my white white head.  I do have a nice shaped head though, not as big as I had imagined most of my life.  I always thought I had a huge circular Charlie Brown head. I really don't.  I think I have a very nice bald head.  Sometimes I even think it looks sexy.  It feels good rubbing it.

My eyes look huge now, I've mentioned this.  So do my lips, bigger.  I do notice that I look puffy; this is a chemo side effect as well as my hormones shutting down.  My face, hands and feet seem very puffy and bloated to me.

I look down at my chest.  On my right, Mopsy's side, is where my incisions are for my chemo port. There is a small circular incision up towards my collar bone; there is a one inch horizontal incision just at the top of Mopsy.  Just above the horizontal incision, which is still fairly red and sometimes irritable, is my chemo port.  It's not so obvious this good sized Lego in my chest, but protrudes quite a bit more when I lay down.

On my left side, Flopsy is looking so much better.  Occasionally she still has a slight pucker, but lots more lately she hangs and salutes in her old usual way.  I am having more discomfort in Flopsy now.  After the first chemo treatment, it almost felt as if electrical charges were going off in Flopsy. When I talked to the Good Witch about this, she said that's quite normal.  As the tumor pressed on nerves, they laid down in a field of poppies and went to sleep.  As the tumor shrinks, the nerve endings come to life.

"Does it feel like a mosquito zapper?" she asked.

Yes exactly, like a quick electrical zap.  It catches you and the mosquito off guard.  Z-z-z-z-ZAP!

After 2nd and 3rd chemo treatment, Flopsy is feeling sore and tender.  There must be some ninja ass kicking going on in there.

Just under my left arm pit is an incision that is about two inches long, healing well but still a little bumpy and red.  That's from where they took my sentinel or first lymph node.

I look at myself in the mirror with no hair and these incisions on my body.  It does look a little wicked.  It does not look like the me that was here just a few weeks ago.  I have been transformed into a cancer patient, or an actress cast as a holocaust survivor.  I look like one now.  I don't look like me.

Sometimes it's hard to keep track of the medicines and shots.  You really have to calendar this stuff in.

I take my vitamins in the morning.  On Chemo day I need to remember to rub the lidocaine into my port one hour prior.  I take a couple of stool softeners each night.  I am also on a cholesterol med, a blood pressure med, and a baby aspirin.  They are a couple of anti-nausea meds to mix in as needed, a milder one, and a back-up plan.

The first afternoon and evening after a chemo treatment, I feel very shaky and wired.  Not a good kind of wired like after you swim or take a brisk walk.  It is a cranky tight possibly explosive kind of wired.  I take the lorazepam that first night to help settle me down.

The dry mouth is a continuous problem.  You have to switch to a soft toothbrush and I have found a product called Biotine very helpful.  They have a toothpaste and mouthwash and that really helps with this cotton mouth.  You cannot use any mouthwash with alcohol in it, don't even think about getting near Listerine.  Your gums are very tender on chemo.  The blisters I had have really calmed down now.  I have also been using a  sample of a prescription mouth wash called Calphalon.  Oh wait, that is the cookware.  It's Caphosol.  It is really helping along with the new toothpaste.  I have had to cut down on things I love like cranberry juice because they are just too acidic for the mouth and gums.

By the evening of that first night after chemo, I start feeling a whole let better.  and hungry.  It's a little hard trying to get to sleep because I do stay wired for quite awhile.  The writing and listening to my ipod really help.  I do need to add more uplifting selections to my ipod, jeez, everything on there is so melancholy.  I mean some fabulous songs, the ones that hurt so good, but mix in something happy now and then girl.

The day after chemo, or Saturday, I feel very good in the morning, like normal.  I wake up good, I am ready for breakfast and feel pretty damn good.  By mid-afternoon I start pooping out, I need a nap.  I find when I hit a wall, I have to lay down right away.  Like I could cry if I don't.  The dry mouth is a constant.  Lately when I haven't been nauseated I've had some intense heartburn.  I have an over the counter for that.

So you kind of play it by ear, if you start feeling nauseated, you get right on it.  It also helps to eat small meals throughout the day.  Little snacks.  I find that cold foods feel best, some cold watermelon, a popsicle, some tapioca pudding, grapes, a smoothie.  Small meals.

Also on that day two after chemo there is the big nausea medicine Emend in pill form. I take that on the 2nd day and third day after chemo.  That drug is also in my IV bag before I get the chemo.  Also starting on day two are the neupogen shots to help restore my bone marrow.  Those are seven shots over seven days.

Did I leave out anything?

Drinking lots of water is good, especially when you have to get your labs done.  Nicely hydrated veins are much easier to stick and fill up tubes faster.  Drink your water.

I also notice the skin on my face and hands is much much drier, so I use some great moisturizers to stay on top of that. and lip balms, you have to have a good lip balm like "yes to carrots" or rosebud salve or Burt's Bees.

The main side effects of chemo are fatigue, yes, this is a biggie.  I can only do so much in a small window of time and then I hit a wall.

Chemo brain, and of course as dear reader mft so kindly reminded me, there is menopausal brain mixed in with that.  That sounds like a dangerous cocktail.  Hello boys.  Keep your cock and your tail safely tucked between your legs in case this lady that still twirls nonexistent hair blows. Oh dear, not the good and noble blow, the blow like when they blow up an old casino in Vegas.

I notice my retention of small things, like a grocery list, is very poor.  When I write though, it is amazing the material my muse brings to me.  Maybe I am like some kind of savant right now.  It feels that way.

Everybody talks about nausea and vomiting with chemo, but I think it's more a tightrope of nausea, dizziness and constipation.  Every person is different.  This is what I have experienced.

Changes in appetite are common, and I have noticed some.  I eat very small almost snack like meals during the day, because for me, that's when I usually don't feel well.  After the sun goes down, I usually feel better and ready to eat more.  As I mentioned, cool foods seem to be preferred, although soup or breakfast for dinner feels really satisfying.

I have been taking much better care of my teeth and gums too.  I always brushed, was the occasional flosser and that was about it.  I brush and rinse and floss several times during the day now to keep things healthy and feeling good.  Also sore throats are common, maybe that's an extension of the dry mouth thing.  I have to have some kind of lozenge at the ready.  My new favorites are Hall's Refreshers, which are specifically for dry mouth.

So far my nails are still long, but I noticed recently they are getting brittle. 

Did I mention I still have my eyelashes and brows, but they are definitely thinning out.  So is Muffy.  I already told you that joke right?  My first cancer joke.  I will have to change Muffy's name to Buffy.

Another side effect is muscle aches and pains from the neupogen shots, I get these occasionally.  I also sometimes experience numbness in my hands, which is a chemo side effect.  Especially after chemo, my right hand, is that because my port is on my right?  My right hand goes through a period of numbness and stiffness that first night.

BORING as Joanne Worley used to say on Laugh-in.  Some of you will probably need to wiki that reference.

It is amazing in just the 8 weeks since my breast biopsy how much my life and routine and body appearance has changed.  I am also not working, on short term disability and my doctor just approved me getting a handicap placard for a few months.

This is where the relaxing into the mystery comes in.  I just don't think that far ahead any more.  I really am taking it one day at a time, and often not thinking more than a few days out.  In my old life, I was always thinking way way ahead, and always felt as if I was waiting for something to happen. I was not in the present day or moment, I was waiting till my weekend, or waiting for this event or that event.  Then I could be happy.  When this happens or that happens, then I will be happy.  I find the happy every where now, fleeting moments of contentment I savor and let drip down my chin. 

I live very much in the now now.  It's why if you haven't talked to me in a day or two or three, it feels like a lifetime to me.  Really it does.  Time ticks by so so slow for me now.  The days are so long.  So long.  I am processing and doing so much and yet so little, if you get my drift.

Relaxing in the face of all this uncertainty is actually much easier.  I really am not spending much time if any worrying.  I am just gliding or body surfing or writing myself into the next moment.  When I am interacting with the people I love it seems so heightened to me.  When I don't hear a peep from someone I love, it feels like a century.  It's just how things are for me right now.  I am conscious of hours now.

Connectedness is very important to me.  I'm still preferring not having too many live phone conversations, they are really draining even when I enjoy talking to the person.  Texting and emailing is so much easier right now.  I do so appreciate those of you who text or email or post comments here often.  It means a lot to me.  It fills the hours.  Being a writer, I am also a reader.  I like, I love reading words.

Writing this blog is the best thing I ever did for myself, I am really talking myself through this.

Shell said "p.s. you're not just brave, you're outright ballsy :)"

You cannot kick cancer's ass one day at a time and not be ballsy.

Now when I asked my old old dear friend, the pigeon toed quarterback, if he was still reading my blog, his reply was "Are you still man bashing?"  By the way, he's not old old, he's just been my friend since 7th grade.  He is my oldest friend as in been around the longest.  Knew me back in the day in the 70's with my Marcia Brady hair and my polyester pant suits.  He used to sit behind me in Mr. Campos' Spanish class and pass me notes that made me erupt into laughter in a quiet classroom, and if not for the fact I was so cute, would have gotten into a lot more trouble.  Anyway, my point was, the women are having a very different reaction to this blog, a sense of empowerment?  The men, not so much.

Remember what I was saying about the things that fall away, and the things that come back to you?  He, the quarterback, is one of those things.  We haven't seen each other in years and years and usually only talk once or twice a year, on or near our birthdays.  He calls and texts more now that he thinks I might actually die, just kidding.  Anyway, it's great to have more of him.  There are some people in your life, you hardly see or talk to, but when you do, there is this immediate strong familiarity and you just slip back into your groove with each other.  It's very comforting and special and he is still high on my list of favorite people in my life.

These are the parts of the mystery that are easier to relax into, the things in my life I have lost that feel as though they have come around again.  Like having my brother Bing here.

Some things that are new I feel like I am losing already.  I guess they were never meant to stay.  I don't know how this will all go, but I am getting a clearer and clearer picture of who will make the journey with me, and who is on their way out.

It's hard to let someone you love fall away.  You can't make them stay.  Why would you want to?

You have to shake it off and walk away from those who are not joined to you.  I'm not so good at this.

Cancer is helping set me straight.

 Seek what seeks me.  Go towards love.  When I said there is power in scarcity, I was referring to texting, as in writing, leaner is better.  Lean and spare sentences are powerful.

Not in relationships.  Scarcity is a tool used for distance.  I don't want those kind of relationships in my life anymore.  I don't know if that's the cancer or the menopause or turning 50 or being kinder to myself.

If you love me, if I am important to you, if you realize how much is uncertain, then come closer.

Come closer and stay close.

What else is there in life other than joyfully and enthusiastically loving the people we love, eating, drinking, making music, writing, creating art and being of service to others?

Come close.  Stay close.

Don't let that be the mystery, wondering if you are here or not.

Raise your hand if I can count on you.

You in?

5 comments:

masonmft said...

I'm in. I'm one of those who starts about 10pm checking for the next post. I've been known to go to bed and if sleep does not come quickly...wth...may as well get up and go check. This is the universal book in the making. Recommended for patients, family, friends, all the Good Witches and their colleagues. What's your favorite morning show. Just want to know who's going to conduct the interview on your book tour. Love You!

masonmft said...

By the way. Who is it who approves my comment and lets me be visible?

writergirldreams said...

hello ms. mft, It is I, the bald wizard who approves comments. Well, actually I opened up access so anyone could post a comment, even anonymously, but then the bloggers recommend you screen them, cause you could get spam or porno or fruit cake. Friends don't give friends fruit cake.

feliz domingo.

Anonymous said...

the world takes on a new look, as does the body.
Biotine has a small container that is a jell. you put a little in your mouth and swish..dont spit. i use it before bed and it helps.

kim said...

I am in also. We may not have seen much of each other over the years, both being busy, but I knew you were there and still have your number in my cell. I may miss a day reading your blog, but usually check every evening. I have also shared with friends who are reading it also. Keep the faith, we love you.

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