Wednesday, June 30, 2010

To Be or Not To Be, The Skunk Replies

To be or not to be– that is the question:
Whether 'tis nobler in the mind to suffer
The slings and arrows of outrageous fortune,
Or to take arms against a sea of troubles
And, by opposing, end them.  William Shakespeare

I'm going all English Lit rogue on you tonight.  I keep thinking about this, to be or not to be.  Sometimes I lose track which one I'm doing or which one I should be doing or which one I feel like doing.

I keep asking myself all the time, am I living this right?

These rough days melt together like cheese in a fondue pot.  After awhile, no matter what you dip in, it all starts tasting the same and you just don't feel like eating any more cheese.  You just want the stuff you're dipping to stand alone and taste what it tastes like, not everything covered in cheese.

Cancer cheese.  I'm dripping in it.

I'm not making a damn bit of sense here, except to myself.

How do you do what you must do, this hard hard work ahead of me, and yet, live a life with moments free of it?  I am still figuring that one out, and I don't think doing a good job of it.

When you have these waves of nausea and exhaustion that keep you close to home and close to your bed, your life is lived in these places, and your pillow becomes your mate and your secret keeper.

They say this next round of chemo I'll be starting is way easier.  I hope so.  I'm getting sick of this.  I really am.

Don't forget how lucky you are to be out there doing your thing.  Sure you get tired and stressed and frustrated and sad and fed up, but you are out there.  If you are not finding more joy in each day, it's because you aren't choosing to find it or make it.  You really do have all kinds of choices, every single day.  When you're sick, your choices are limited, and let me tell you for the millionth, it gets old.

I am sick of fondue.

Oh no, are you kidding me????????  One of the dogs just got skunked out in the backyard.

Not even chemo gives you a pass on that one.

Skunk stink won't wait till you feel better.

You gotta wash that dog cause she stinks, but mostly cause you can't stand her cryin.

Barf.

I mean Bark.

Tuesday, June 29, 2010

Cheesy Baked Penne Rigati, Chemo Style

I keep thinking any day now I'll be able to write again about the fluff and funny stuff, any day now I'll add "lightness" for you faithful instead of "weight," making you people work so hard thinking about your life.  Not much of that material just yet, 4 days after chemo.  Maybe by the weekend if you can hang in till then, I'll come up with somethin

When you have a few hours reprieve feeling good you get all cocky and think yeah baby, I'm home free.  Remember the ice cream and cakey cake song?  You start singing that and do the Pee Wee Herman dance.  You get all excited and you start thinking about making a big fat baked penne rigati.  Nothing like Italian comfort food when you need major comfort.  You start pulling out pots and pans like a fiend; you get the bolognese sauce bubbling and spitting, the big pot of salted pasta water steaming, talking and rolling and you are in this sacred space in your kitchen thinking life is good.  You rip open that bag of penne rigati and just about to pour it in when...

Holy crap, I'm gonna be sick.

Go Robin.  Run upstairs and get Mommy's magic bag of tricks.  Remember Felix the Cat?  I have the pink breast cancer edition.  Hurry Boy.  That boy can scramble up the staircase and into my room like lickety split, grab that bag and hurdle the stairs like an Olympian on the way down.

I sit down.  Zip open my bag.  When in hell did I start taking so many different medicines?

No, not that one, no not that, not that one or that one and not this preparation H.  Ah, here it is.

I pop my magic.  Swallow.  Breathe.  Breathe.  Breathe.

I get up slowly, throw the pasta in the boiling water, give it a good stir and sit my seasick maiden's ass back down.

Deep deep breathing really helps when you feel your diaphragm pressing on your lungs, and your stomach morphing inside your solar plexus, growing a claw that reaches up your esophagus and into your throat to gag you just so you are clear "we mean business bitch."

The magic pill and the deep breathing and the desire for baked pasta of any kind allows you to get up, stir your pasta and cook until al dente.

When your pasta is done, you drain it, not all the water, leave some dripping and throw all of it into your bolognese pot.  Fold and stir, then take your container of ricotta cheese and start folding that in.  Incorporate most of it but cheesy ricotta lumps are fine.

Get out your casserole dish, pour all that meaty creamy saucy penne in, then get your fresh mozzarella and grope it, arranging chunks of it all over the top of your pasta.

Oh baby.

While the penne is baking, you wipe the sweat off your brow, put your feet up, have a popsicle if you need it and wait.  Wait for the casserole to cook and the nausea to subside, whichever comes first.

After the pasta is all bubbly and the cheese is soft and melted, I like to broil it just a bit to give some great color to the top and then she's a done!!!!!!!!!!!!!!

When you feel better, then you can eat.  M-m-m yummo.  A whole new meaning to comfort food.

Enjoy!

I'd like to see Bobby Flay with a chemo port and Rachael Ray with a bald head cook like that and try to throw me down.

Bring it on.  California girls are a lot tougher than you ever thought baby.

Recognize.

Now clean your plate.

Monday, June 28, 2010

A Break in the Weather

It was warm today but now that the sun has gone down, it's really cooled off.  It feels good.  Really good.  There's been a break in the weather.  For me too, I'm feeling better these last few hours.

When you don't feel good, you get small in your movement and in your thoughts too.  You go super green and conserve energy like you wouldn't believe.  It doesn't really help to try and do the things that would normally make you feel better, like read or play the piano or watch something funny or talk to a friend.  You don't have the energy for that.  The thought does not even occur to your brain.  You get still and small and quiet, and your breathing becomes your focus.  You're out there, treading water, or riding out a storm, getting pulled under.  It's mostly about the waiting.  Waiting for the weather or your resolve to break.

When the weather does break, it's not all of a sudden.  It happens over a few hours, in the smallest of increments, like a teaspoon at a time.  Then one more teaspoon and you turn some metaphorical corner, and realize you are on the other end of it.  That's how I feel right now.  I am tired but the nausea has subsided, my body feels lighter, my brain feels as if it has come back into focus.  I feel better.  There is a lightness to me.  Now when everyone is winding down the day and getting ready for bed, I am ready to get dressed and come to call.  Leave your front door open for me.  I will read you a fairy tale while you sleep or cook something in your kitchen.  I will let myself out.

In these days after a chemo treatment, the "weather" has not been as predictable as I was hoping. It comes in waves, some like bobbing in a little sailboat on a big ocean, you feel seasick but every now and then it gets quiet and you rest.  Other times it's an undertow that pulls you down and feels like it will never end.  Those are the times that start affecting your spirit.

I haven't really addressed depression as part of this journey; I know you can tell by the tone of my posts when I am swimming and when I am floundering.  It's not just the big picture that gets to you, it's the day to day when you don't feel good, it wears you down.  It really wears you down.  It's a gradual process and each day when you don't feel well added on top of a pile of not feeling well, you give up a little.

A little. Sometimes the give up is a little.  You just want to sleep.  Other times the give up is big, and you start planning your escape!  Getting this out of my head, letting my fingers do the talking, seeing these words on this page, it cleanses me and frees me, sometimes in huge ways, other times just enough to keep me going.

Some days I walk strong, some days I step wobbly like a toddler, some days I crawl, the worst of days I just breathe.  Some days are moments filled with all of these, back and forth, loss and gain and loss and gain.  You go with it when you are wise.  You fight it or try to tell it what to do when you are foolish.

I think the best thing you can do for yourself is to accept that each turn of weather is a passage.  It is fluid and chaotic and unpredictable.  It is always moving towards change even when it is negligible to you.  You just have to hold on.

It takes practice to go with the flow not knowing where you'll end up, what is the plan, is there a plan?

I have found, even with all the uncertainty and surrender required to go with the flow, struggling the whole way is worse.  It depletes energy and soul in ways that are wasteful, leaving you with no reserves.

I was never good at that little game where someone stands behind you, and you close your eyes and fall back and trust they will catch you.

With practice, I am learning to let go of this process, let go of outcomes, embrace those who show up, let go those who leave, teaspoon by teaspoon.  I know now, after spending nights waiting, staying away is what I can count on from you.  I don't look for you anymore.  I am looking at who is on the way.

In the beginning, you regard this as a battle, and believe if your sword is big enough and you can swing it strong enough, you will defeat your enemy like some great warrior.

I found out you have to put the sword down.

What you need is an umbrella, and probably a hat and scarf, and a heart, despite its fear, open just enough to every moment as the perfect teacher.

Good night Baby Bear.  I miss him too.  Hug.  Mama Bear.

Sunday, June 27, 2010

Before You Get Carried Away

Hello from my bed.

This is where I lived most of this day today.

For future reference, before you start celebrating the last of your AC course, and before you toss your pink graduation cap in the air like Mary Tyler Moore on the streets of Minneapolis, you should wait till you've received all the gifts that only chemo can bring.

It's about 11:30 pm and I've been receiving them since early this morning.

I am tired and cranky and nauseated.  I have burping heartburn and I'm flashing.  I have a headache and my hands and feet feel so bloated they are tight.

I feel like a dog who keeps circling in his bed to find that comfy spot but I can't find it so I just keep circling.

This is what some days are like.

You just do your best, you get through them, and you don't hope for big things.

Just small things like tomorrow will be different.

This is what some days are like.

Saturday, June 26, 2010

AC Graduation, Tossing my Pink Cap into the Air

I don't know if I've ever talked about the day after chemo.  Let me back up.  So yesterday was the end of my AC course.  Yeah baby.  High five me!!!  Each session has been very different for me.  Let's review, shall we?

With most all of my chemo sessions, the day of receiving chemo treatment was the same.  I would leave chemo very hungry, more like ravenous, and then feel really tired.  I would want to rest or nap, but felt wired, shaky, anxious and extremely irritable.  On that first day, I did not feel better until very late in the evening, and usually could not sleep until 2 or 3 in the morning.

On the second day, which for me falls on a Saturday, what a difference a day makes!  All the good meds they gave me during chemo, have all kicked in like super powers.  I also take the 2nd and 3rd day Emend pill. 

By the Sunday following Friday's chemo, the nausea is medium intensity, chronic but manageable with meds.  I start to feel more fatigued.  The real heavy duty side effects for me were not really felt until the following Tues, Wed, Thurs after chemo.  Those side effects were different each week.  Oh I forgot, I learned the hard way, and I mean the hard way, to start taking laxatives and/or stool softeners the night of chemo and the next couple days.

Chemo Course 1:  terrible constipation, extreme headache and vertigo I think from coming off of Vicodin used for biopsy and port surgeries, lots of pain because of surgeries, chronic nausea, lots of pain in port.  My first "good" week, I got my period. 

Chemo Course 2:  lifeless fatigue, almost intolerable nausea, mouth sore problems, dry mouth, some foods did not taste right.  My 2nd "good" week?  I caught a cough and cold.

Chemo 3: chronic but tolerable nausea, terrible melancholy, extreme fatigue, mouth sores got better.  My 3rd "good" week? A surprise guest, the period I was not supposed to get anymore, and it was brutal.  One of the worst I've had.  I won't scare you with the gore on that one.

Chemo 4:  the day of, terrible metallic taste during chemo, lots of fatigue, weird sensations in Flopsy during chemo - like electrical impulses and some burning, nausea started right away.  Usually the day of chemo I am tired, wired and irritable, but it all gets better by late evening.  Did not happen. Side effects stayed and I went to bed with them.

Woke up Saturday, and felt great.  Wow, these Saturdays when all the good meds kick in are really strange.  Not sure what to expect this coming week.  My last labs showed my hemoglobin count was down so expecting additional fatigue this week and not sure what else regarding side effects.

Spent most of today relaxing so I could attend another of Batman's competitions.  This is one of my favorites, held at Stanford University.  What a beautiful stadium and the acoustics are incredible.  The Blue Devils came in first place!  and of course, my boy was the best and handsomest one out there.  I made it through the evening, getting home very late, and although tired, generally feeling good and wide awake even though it is now 2 a.m. Sunday morning.

I am still counting this as my Saturday blog.  What you going to do about it?

I don't know what to expect in these next few days, or in the good week.  I will keep you posted.

I am relieved to have the AC course done.  I start weekly Taxol on July 9 and will be on that through the summer and into September.  The Taxol is supposed to be much easier as far as side effects, and will only take about an hour to receive, as opposed to three or four on the AC.  Also, I won't need the 7 days of neupogen shots for my bone marrow anymore.  My only concern at this point?  Having my port accessed weekly.  My port and incision site is still problematic. I hope they can come up with something for me.

Boring blog tonight I know.  Just a wrap up.  We can put the AC to bed.  Rather, send it back to hell.

You are outta here!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  Thank you and eff you AC.

Best tips throughout this first course of chemo?  Get plenty of rest.  Drink lots of water.  Fruits and cool foods seem to be tolerated easier.  You need lots of moisturizer, lip balm, and toothpaste and mouthwash specially formulated for dry mouth.  Get obsessive about your dental health and taking your vitamins, including vitamin D3.  Keep your stress to a minimum.  Stay on top of your anti-nausea meds, don't wait until you are too far gone to pop one.  Take them at the slightest hint of nausea.

Surround yourself with the things and people that are comforting to you.  Make sure your bed has clean sheets and you have comfy socks.  Place items that comfort you and are for your convenience near your bed.  Write a journal, get this stuff out of your head.  Stay in close connection, however you like to do that, with the people you love and who are positive and supportive of you.  I have found that talking on the phone was just too much for me.  I preferred texting and emailing.

Popsicles are mandatory, I like the fruit based low sugar ones that actually have nutrition.  You will find there are times where all you feel like eating is something cool and refreshing.

and don't forget your music and favorite TV shows or movies.  Have at the ready the music you love to listen to.

I am proud of me.  I still have a long way to go, but when I look back since my abnormal mammo on April 7, and everything I went through, what a rough rough start, I am proud of me.

Thank you everyone for all your love and support and cheerleading and prayers and lifting my name up.

Thank you.

Onward.

Friday, June 25, 2010

The Smell of Victory Trumps Alien Stink

I was really dreading chemo today as much as anxious to have this first course over.  This morning was my last course of 8 weeks of the AC portion of my chemo.  This is the roughest, given every other week so you can rest and restore before you get the next bag of whoop ass.

My last treatment, two weeks ago, I had a really rough time on the stick.  It really hurt, like made me sick hurt.  Over these last two weeks the thought of it made me feel like I could vomit.  I don't throw up often folks.  As in rare.  I got this aversion when thinking about the stick.  What am I going to do when it's weekly?

Kitty said this time, she would  have me lay down to insert the port.  When I lay down, the port pops up a little more on my chest and she was hoping that would be easier.

I've been dreading it.  9 am this morning it was finally here.

My Vonda is on vacation this week.  Hello girl.  Wish I was in Tahoe with you.  Miss you.  The Good Witch is also on vacation this week.  Hope you are both enjoying the time with your respective families.

Never fear, the lovely Mariah all in pink was my check in nurse today.  and Krissy came to give me a hug. Kitty was waiting for me in the chemo center.  They always give me a private room, which is very thoughtful.  There are a handful of private rooms, and two large community rooms.  It's great to have the private room, I really appreciate they do this for me.  I'm all hooked up with the people that hook me up.  For once, I am the VIP getting the royal treatment I give the VIPs in my job.

A little secret?

Every single table is VIP to me.

That's why I'm a rock star on Yelp.  I've received some great comments from guests, but the best of all was one night, this adorable young couple came in, all excited to be in Napa. We hit it off right away, and then the young man said to me excitedly "Are you Kitty?"

The back story is on Yelp you aren't supposed to use a real server's name when you talk about them. So this one couple that gave me a fabulous review named me "Kitty" after the lady on That 70's show.  They thought I laugh like her.

Anyway, tonight's couple are total yelp addicts and they were hoping beyond hoping they would also be waited on by the fabulous Kitty.

"You read the review?" I laughed hysterically.  I had already been teased about it by our Chef owner and my coworkers, everyone calling me Kitty and saying things like "meow" and other things that can't be mentioned here.  You know who you are.

"Yes, yes, OMG, we were hoping we would get you!"

Crazy.  Crazy good.

My Kitty (also an alias) was dressed all in brown today which made her aqua green eyes glow.  We reclined the chair and I laid down and popped up that port as best I could.  Kitty was anxious, she knew last time was rough and felt bad about it.  She rubbed near my incision and on top of my port.

"How you been feeling?"

"I'm really tired today."

"Well your hemoglobin number was down.  It's still high enough for us to go ahead, but that's probably why you are feeling tired.  Your numbers will come back up next week."

"Yeah, I'm looking forward to a couple weeks off.  I don't start the weekly until Friday July 9th."

I think Kitty was trying to distract me from thinking about the stick.  Thank you Kitty but you don't understand who you are dealing with here.

I looked over at Husband.  He knows who she is dealing with.  He looked at me, he was dreading the stick as much as I was.  He looked a little sick himself then looked away.

Ok, take a deep deep breath, HERE WE GO."

My favorite ride at Disneyland is Peter Pan.  Remember in the beginning of the ride when Peter exclaims "Ok everybody, here we go!!!" and your little sailing ship glides through the children's room and out the shuttered window?  I never thought in a million years one of my favorite phrases would be what every nurse and lab tech would say prior to the stick.  Life is ironic and has a mean sense of humor sometimes.

I took a deep breath, like the ones in labor, it went in, ow, ow, then it stopped.

"Was that better?" Kitty really hoped.

"Yes much better."

Kitty tested it.  They draw out blood to make sure the port is still where it's supposed to be in the fat vein with the cool name.  Nothing happened.  She pressed down on the port trying to get the needle in deeper.  No Kitty no.  Don't touch it.  I felt like a kid when your Mom wants to touch the splinter.  No, don't touch it.

It was a few seconds of real discomfort and then the blood flowed.  She was in.  I know there was a minute we both thought she was going to stick me again.

"I think your port is very deep, I don't know if there is scar tissue on top or what, but there shouldn't be that much tissue on top of the port.  That's why this hurts, we are going through too much tissue and blood and nerves."

From what I read, there is supposed to be a thin veil of skin over the top of the port.  That is not the case with me.  It's still deep.

The chemo needle does not look like a regular small needle.  It looks like a small nail, curved like a fish hook.

Can I just say, I frickin hate that thing.  I hate it.  I hate it.

What am I going to do when I start 12 weeks of weekly chemo?  What am I going to do?

I am not so brave as you think I am.  My courage is only a couple seconds faster than my fear and former blond brain.

Before I knew it, the red bag was going in.  That's the big gun.  That's the one that is kicking this cancer's ass and made me lose my hair.  It takes about twenty minutes.  It is the "A" in the "AC" combo.

Here's from my earlier post "Finding Chemo" to remind you about these drugs.

I don't think I've told you yet what my chemo regimen will be. It's called AC-paclitaxel:
doxorubicin (dox-oh-ROO-bi-sin) or Adriamycin® (a-dree-a-MY-sin) 
cyclophosphamide (sye-kloe-FOSS-fa-mide) or Cytoxan® (sye-TOX-an)


These are the two drugs I will start with, given together, every two weeks, for four courses. So a total of eight weeks on these two. Also, the day after chemo and the day after that I will take the super pill, the expensive one, called Emend. It is a powerful anti-nausea drug. Also, the day after my first chemo treatment, I will be receiving a shot of a drug called neupogen. This helps when the chemo kills my bone marrow. I will have to go to the cancer center each morning to receive the shot, seven days in a row.

paclitaxel (PAK-li-tax-el) or Taxol® (TAX-all)

This drug will be given to me for 12 weeks, on a weekly basis.

I had to pee after the red bag of "A" and before I started the bag of "C" which takes an hour. I wheeled my IV stand into the bathroom.  You pee red right away.  Have I mentioned the stink?  It is not a normal human stink and way worse than after eating asparagus.  It is an alien stink.  Indescribable.  Like nothing you've ever smelled.  Alien stink.  I don't want to smell it ever again.

So is the taste that occurs in your mouth sometimes during chemo.  It was strong today.  It is a metallic alien taste, like biting into a droid and chewing twenty times before you swallow.

Alien stinks and alien tastes.  Welcome to Everything You've Always Wanted to Know About Chemo but Were Afraid to Ask.

I finished up, now we gotta take the needle out.  Kitty flushes a little saline through it to clean me out and make sure everything has gone in and not still sitting in the tube that runs through my chest and into my Vena CavaVena Cava.  Sounds like a sexy wine cellar down a narrow staircase, candlelit, and you have to blow the dust off the bottles capped in red wax.

A little tip for you.  A wine bottle capped in wax DOES have a thin veil covering the top.  I think it's the easiest and sexiest way to go in.  Don't cut it, the wax is too thick underneath the rim of the bottle.  Just insert your cork screw into the top and patiently work it through the wax and into the cork.  Go as deep as you can, then pull it off.  The thin layer of wax on the top cracks away.  It works every time.  The crowd roars.

"Ok here we go."

Poor little Tink me.

She pulled it out.  It was a bit of a bleeder.  She pressed a cotton ball onto it.

She looked concerned.

"This is why this hurts so much going in.  I am going to check if we should have you massage it, and if that will help it pop up."

There's a joke in there but I'm leaving it.

The needle site bled a little more.  It should just bleed a drop and stop.

So I did it.  Finished today the AC regimen except for the shots, but no more little red bags for me.  I did it.

A milestone.

There is another milestone happening tonight.

Batman's first competition as part of the snare line of the Concord Blue Devils Drum and Bugle Corp.  He will be on tour and competing all over the country, leading up to the finals in August before a full stadium.  The best drum corps in the country will give it their all at Lucas Field in Indianapolis, but only one will be the World Champion.  The Blue Devils are going for number 14.

Tonight in Clovis, California, my son will take the field in a blue and black uniform, and the dream he dreamed will take its first breath.

I am breathing it in from my bed.  I am so proud and so happy for you Son.

We did it.

Now let's win it.

I love you Batman.  your Mama (mana)

Thursday, June 24, 2010

Blood and Communion, Weight or Lightness

"Of all that is written, I love only what a person has written with his own blood.  Friedrich Nietzsche"

I will remind you that before you have a chemo treatment, you have to get your blood work done.  It's called a CBC or complete blood count.  You go to the lab, they withdraw a couple of vials and send it off.  Before you receive chemo, they check it to make sure there are no signs of infection or low counts on anything.  If your numbers aren't right, no chemo for you baby till your numbers get right.

The numbers come from your counts of white and red blood cells and platelets.

So go back to sophomore year high school biology, you remember this stuff.

White blood cells are the core of your immune system and help your body fight infection.

Red blood cells are the oxygen bar of the cells, transporting oxygen to cells all over the body.

Platelets are part of the blood clotting system and help prevent bleeding.

A day or two before chemo, you get your labs done.  I'm lucky.  Right down the hill from my house is a satellite office of a larger lab.  It's tucked into a corner of a small medical center; it's always a very quiet office.  Only one person works the lab, drawing the blood and filling out the paperwork.  I've never seen another patient in there whenever I've gone.

Usually when I go, there is a very pleasant woman who I believe is the full time person.  She knows me now.  She knows she will be seeing a lot of me over the next year.  I appreciate the fact that she never has a problem drawing my blood.  This is not usually the case for me.  I am one of those people with small deep veins that usually blow as soon as they stick a needle in.  Nothing like sitting there, breaking into a sweat as someone continues to poke you looking for a good vein.  I can't help but feel extremely anxious every time someone new has to stick me.

Today when I arrived, Sherri, the full timer, was not there.  A very young woman barely in her twenties, Tina, was working the lab today.  It took her awhile to find my orders.  Sherri doesn't even have to look anymore.  she just knows.  I sat in the chair waiting while Tina searched the files and got on the computer.

I could feel myself getting queasy.  It's not the sight of my own blood that bothers me.  I've had some terrible experiences getting blood drawn and IV's started.

These are the moments you really have to talk yourself through.  It's almost like a mini panic attack.  You just have to breathe through it and talk yourself down from the ledge.

Tina continued to ask me lots of questions.  I don't know, I thought, where is Sherri?  She knows what to do with me.

Finally we were ready to go.

"Do people have a hard time finding a good vein on you?" she asked as she examined my forearm.

Aw shit.  Settle down, settle down.  Breathe.  Breathe.

"Yes, and others no problem at all.  Usually dead center on the left arm is my best spot."

"Ok" she says as she presses her finger on my left inner arm looking for a bulge.  She keeps pressing and ties tight the rubber tourniquet.  Ouch.

She shows me her arm.  "See, I've got huge veins, no problem.  In school they used to practice on me."

Great.  I'm happy for you.  Stick me.

"Ok, make a fist."  I press my fingernails into my palm.

She continues pressing.  I continue praying.

"Ok here we go" and I feel the stick and burn.

There are those 2 or 3 seconds waiting to see if the stick is in the right place that feel like the slow mo time of an earthquake.

One thousand one.  One thousand two.  One thousand...

"Great, here we go.  Open your fist and relax."

I sat there as she filled up a couple vials.  My DNA is all over the Bay Area now.  Blood and breast tissue and a lymph node sliced like pate.

"Ok, we're all done."

"You ever get lonely in here?" I ask.

Her cheerful disposition changed.  She looked sad.  I didn't mean to stick her.

"Yeah, I do.  Sometimes hours go by between clients."

"What do you do to pass the time? Can you read or talk on your phone?"

"Yeah, I usually bring a book.  I get lonely though."

I smiled at her, one of my best Mommy smiles, the kind that wraps you in a blankie and pats you while singing a lullaby.

She smiled back tenderly.

I always thought I'd be the mother of a daughter.  I always thought I would.  Having boys is fabulous, it really is.  Especially mothering sons and evolving their species.  I always thought though, I'd get the chance to mother a daughter and give myself a re-do.  I loved my mother madly, but she was only 15 when she had me and over the years, we switched roles.  I became WendyBird to my MotherBird and she died before we ever got the chance to switch back.

"Can I ask you something, if you don't mind?" Tina said hesitantly.

"Sure honey."

"What kind of cancer do you have?"

"I have breast cancer.  This is Flopsy and this is Mopsy" and pointed to my girls.  Tina giggled.

"I was diagnosed with breast cancer in Flopsy.  I'm doing good though" I reassured her as I saw the worry on her face.  "I had a PET scan that came up clear."

"I'm doing good" I said again convincingly.

There are moments when that is the biggest blue whale of a lie I tell so that you can feel better.

Tina looked relieved.  "I have a four year old son" she said as she dug her cell out of her pocket.  She showed me her screen saver; he was a cute, big boy for only four.

"I'm divorced, my husband cheated on me.  My son came out of a rebound relationship.  I had to move back home with my parents.  It's funny though, with all the bad that happened, my Mom and I are so close now.  We never had a good relationship before, and now, we're just so close."

This is when I know I am supposed to be a writer, every time a stranger reaffirms my sworn duty by trusting me with their story.
.
"You are blessed Tina to have that with your Mom..." I said as I felt my lip quiver.  Oh God Damn don't tell me I'm going to cry again.  WTF is it, wearing my heart on my sleeve lately.  I used to be such a good liar.  I used to be able to bite my lip or clench my fist and give my best performance in a supporting role.

I paused. Tina looked worried.  She stepped in closer.

"Sometimes, the hardest part" I choked "is going through this, without my Mom."  I didn't tell her the other hard part.  Going through it without a daughter.  My eyes filled.  Tina's eyes filled.  She grabbed us both a tissue.

Two strangers.  Standing there.  Dabbing.

"I hope everything is going to be ok for you" Tina said.

"Thank you honey."

"Thanks for talking to me today, and I love how you coordinate your scarf with the rest of your outfit.  You look really nice."

"Thank you."

"I hope I see you again" she said and meant it.

I had to take a deep breath.

"I hope so too.  Have a good day."

"You too" she said as I turned to go.

I walked towards my car, alone as I've ever been, connected as I've ever been.

The heaviest of burdens crushes us, we sink beneath it, it pins us to the ground.  But in the love poetry of every age, the woman longs to be weighed down by the man's body.  The heaviest of burdens is therefore simultaneously an image of life's most intense fulfillment.  The heavier the burden, the closer our lives come to the earth, the more real and truthful they become.

Conversely, the absolute absence of a burden causes man to be lighter than air, to soar into the heights, take leave of the earth and his earthly being, and become only half real, his movements as free as they are insignificant.

What then shall we choose?  Weight or lightness?

from The Unbearable Lightness of Being.  A Novel.  Milan Kundera

Wednesday, June 23, 2010

Finding Meaning at the holy temple of the DMV

I decided today, to get out of the crib.  I've been spending way too much time at home, and not so much out in the world.  When you don't feel good, you stay close to home.  Even when you anticipate you might not feel good, you stay close to home.  It's self fulfilling.

I had a small list of errands to run, on my own.  Very small compared to back in the day.  Very small.  Pick up reserved books at the library.  Go to DMV to obtain temporary handicapped placard.  Go to the Bank.

That was it.  3 things.  I thought about them as I lay in bed this morning.  Maybe I was being too ambitious.  It seemed overwhelming.  A little frightening.  All that time, out there, on my own.

This is what happens when you perceive solid ground has shifted into quicksand; your movements get smaller and careful and deliberate.

Maybe I should take some things off the list.  Just do one.  Maybe not today.  I could do them tomorrow.

I got up to get ready.  I'd decide on the fly.

You have to moisturize way more than your normal when you're on chemo.  You are dry.  Very dry.  Skin and mouth and nose.  Dry and not the good kind like a martini.

Hello from the ledge.  Just hand me my drink and after I've sipped, give me a push.

I almost jumped into my uniform of purple velour pants and hoodie.  I decided to take it to a whole n'other level.

I put on a fuchsia dress with a paisley print that hugged and wrapped Flopsy and Mopsy, and showed my incision scar for my chemo port.  I wrapped a pink and fuchsia scarf around my head, wore little dangly crystal earrings and a crystal drippy necklace. Bare legged with jeweled sandals.  Pink glossy lips like rosy champagne. Dark brown Guess shades.

I looked cheerfully Spring if not sexy today.  I felt sexy.  I decided I was going to work it today.  Work it.

I still wasn't sure if I'd be working it in just the Bank, or the library, or maybe DMV and library.

Surprise me.  I'll surprise me.

I went to DMV first.

Walked through the sunshine with the confidence of a neon bald lady with a signed application from her doctor for a handicapped placard.

A man in his pickup truck slowed down to take a long look.

Work it.  Work it.  This is what a sexy Scorpio with cancer looks like.  This is how I'm going to roll today.

Got in line, still working it.  A man in line was undressing me, imagining himself unwrapping my bald head while hot pink lips whispered yes.  You wish.

Here's your ticket.  Have a seat.  Watch for your number.  C018.

I sat. I waited.  Looked around.  A lady walked past me chatting on her cell phone then interrupted her conversation to say "great shoes."

I stood out.  In my pink.  In my jeweled sandals.  In my scarf.  In my attitude.

I waited.  I thought about things.  and then it was clear, sitting there in the DMV.

I can either let this cancer thing work me, or I can work my thing.

A handsome man in a dated suit walked up and said "Is this seat taken?  May I sit here next to you?"

I looked around.  Lots of empty seats.  He could not help it.  I was working it.

I sat in the DMV.  I looked at the other people waiting there.  All kinds, ages, ethnicity, stories.

I felt content.

I remembered something really important today.

I like me.

I like how I roll.

I like how I love.

I like how I give.

I like how I feel things.

I like how I search for meaning and find it.

I like how I find the extraordinary in people and mirror it back to them so they can see what they thought was lost.

I like me, sitting there in the DMV, and I can do this better.

I can do this better.

I got my placard.  It's official.  I'm temporarily disabled and parking blessed for the next six months.  Let's go try it out, shall we?

I drove to the library.  Hung my little sign.  Pulled in right up front.  This is good.

Drove to the Bank and Target and the grocery store, and worked it in each place.

Not only can I do this better, now when I'm out there working it, I won't have to worry about where to park.

Today cancer giveth.










  

Tuesday, June 22, 2010

Somewhere Between Death and Birth and Boredom

All changes, even the most longed for, have their melancholy; for what we leave behind us is a part of ourselves; we must die to one life before we can enter another.  Anatole France

          writergirldreams 

Life swings like a pendulum backward and forward between pain and boredom. Arthur Schopenhauer

See that?  Up there.  That's me, somewhere between death and birth and boredom.

This is the part nobody tells you about, this place I am right now.  Stuck yet stretched way too far.  One foot firmly and stubbornly planted in Tara - the life I am leaving, and the other foot being pulled towards the unknown Terra - my new life.

It is palpable.

- intense: so intense as to be almost able to be felt physically
- obvious: obvious or easily observed
- able to be felt: able to be felt by the hands, especially in a medical examination
Encarta World English Dictionary

I miss my hair.  I miss my job and my peeps and opening bottles of wine and writing down the 86 list.  I miss being able to sleep on my right side without a meteor in my chest.  I miss the cadence and routine of my old life.  I miss Flopsy and she isn't even gone yet.

I am tired of wrapping and twisting a scarf around a bald head.  I'm tired of one day turning into the next three.  I am tired of waiting for the good days that are at best, moments.  I am tired of - Hell, I'm just plain tired.

I am living this life in increments. 

This is the part nobody tells you about.

Since I cannot drink (a martini sounds so good right now), I think it is time to fight like a girl and pull out the cupcake pans and start baking and frosting, and watching a boy lick the spatula and bowl of its batter.

That is what I will do while I am stuck in this place between leaving and going nowhere and incrementally heading somewhere.

Cupcakes.
 
Boredom: the desire for desires.  Leo Tolstoy

So what did you do for your summer vacation?
Oh gosh, I had cancer and went to chemo, would you like to see the pictures?

I'm whiny tonight, ain't I though?

Send in the clowns, cause this is the stuff nobody tells you about.

This place between death and birth and boredom.

Monday, June 21, 2010

Showing Up

Most nights when I sit down on my bed to write, I'm not sure what to write about.  The title box and post box look so empty.  Did you know it stays empty if you don't touch the keyboard? Often the day's events are on my mind, and I start typing.  I have a general idea what I'd like to talk about, but it's a scavenger hunt collecting clues not knowing where I'll end up.  I just keep going and I know when I'm there, and often, it's a surprise.

That's the magical part.

You might think I knew where I was going all along.  I didn't.  I don't draft these on paper or make notes or anything.

I just show up and put my hands on the keyboard and wait.

Some nights, like tonight, I show up and put my hands down, ready to go, pinkie of the left hand on the "A" and pointer finger on the "F."  My right hand has the pointer on the "J" and the pinkie on the colon/semi-colon.

I look down.  Yes, fingers are in position, thumbs are ready to jump in.  Ok, let's go.

and let's go...

I said let's go...

Woody Allen said something like 80% of life is just showing up.

Sometimes you show up and nothing magical happens, except the train horn I hear right now.  It's the Amtrak across the strait from where I live.  Who are those people?  Where are they going?  I will never know, but I do know this.  They are on a train because they showed up.

Sometimes it's not about what you do or what you say.  It's about showing up.

Your whereabouts are accounted for because you are here or there because you showed up.

You don't always have something profound to say or late breaking news.  You just showed up.

I remember the looks on my kids faces, the times when I, or their Dad and I just showed up.  Especially at their school, when they did not expect it.  There is an exchange without words that happens when you show up and someone sees you are there.

Sometimes you show up with a little text message that simply says "Hi" or "Thinking about you" or "Hey there."

Sometimes you knock on the door and it opens and you are standing there.

Sometimes you show up even though you are hurt or angry or sad or confused or scared.

Sometimes you don't know what you'll say.  You just show up.

Sometimes you stay stuck and so you don't show up.

You let your fear shape you, or your anger, or your expectations, or your assumptions, or your ego.  You stay stuck and you don't show up.

You talk yourself out of it, knowing you should have shown up.

I think 100% of a meaningful, present life starts with showing up.

I think 100% of loving the people we love starts with showing up.

I think 100% of the creative process always starts with showing up.

I did not realize I would be doing so much math tonight, throwing all these percentages around.

I did not have much to say tonight.

I know, despite this, you are glad I came.

I showed up, just like I said I would.

Do that tomorrow.  Show up somewhere you have been absent.  Show up somewhere someone has been looking for you.  Show up somewhere you have let your fear or anger keep you from showing up.

Just show up.

It's ok, don't be afraid, even if you don't know what to say.

Just show up.

You can't ride the train unless you show up.

Oh dear, did I mention you also have to show up on time?

So get a watch.

Sunday, June 20, 2010

Idol Hands in the Cancer Workshop

I don't know man, these idol hands, you gotta watch out how far inside your head you can go when you have way too much time on your hands.

You have to think.

You have to feel.

You have to evaluate.

You have to grieve.

You have to face it.

It's like damn groundhog's day, you just keep going over it again and again and again.

I suppose it's different for everyone, the things you mull like Fall cider; mine is a rich potpourri baby.

You gotta deal with stuff when your life as you knew it stops, when your calendar has been cleared for you, and when your energy level just won't let you run from your shit anymore.  Damn, hello, caught up with me, eh?  Fine.  Sit down.  I'm listening.

This is what happens people when you aren't busy rushing around avoiding your stuff.

You take a hard look at your life.  and yourself.  Hello Self.  Meet Self.  Hello.  "Do you like my hat?" Remember that from "Go Dogs Go?"  Love that book.

You start sorting out the piles of Keep, Donate or Trash - the metaphorical ones and the people ones.  That's what I've been up to. Whole days of conversations with myself, sorting, sorting, sorting.  I have to watch myself like a hawk or else a bunch of things and beings that should be in the Trash pile are in the Keep.  I have to really watch myself cause I'm tricky that way.

I think tomorrow I should take a day off and just play.  Take a stay-cation from all this hard hard work my former blond brain and my soul has been doing on itself.

I need to play.

Wanna play with me?

Saturday, June 19, 2010

Mad Cow, I've Been Thinking, A Super Hero, and the Kindness of Strangers

Holy Crap, what a rough rough day at the mercy of my hormones in all their glory and fury.  If my hormones are on their way out, they are throwing one hell of a drunken depraved animal house party.

and then I started thinking.  Do not try this at home or make any major decisions while on chemo while your hormones are shutting down while you are bald.

I started thinking about my PET scan.  I started thinking no glow, anywhere.

DING DONG THE BITCH IS DEAD, THE WICKED BITCH, THE CANCER BITCH, DING DONG THE WICKED BITCH IS DEAD.

I am outta here.  I don't need any more chemo.  I'm done.  That's it.  Isn't anything more overkill?  Can't I just operate on FAITH now.

Am I allowed to do that?  Am I crazy enough to do that? 

My gut and my body and my pre-menopausal mermaid brain were talking loudly to me today.

I needed guidance.

I wrote The Good Witch an email, something like this-

Can we talk?  I don't know if I am suffering from Mad Cow, but I am thinking about my PET scan and I need to talk to you before chemo next Friday.

I didn't expect a reply for a few days, I mean, it's Saturday.

This lady is something.  She emailed right back.  "Give me your cell.  I'll call you when the kids are down."

Let the record show once again, The Good Witch is a super hero in high heels with a stethoscope and pearls around her neck, the lives of cancer patients in one hand, and kids who still need naps in the other.  Damn Lady.

A moment of applause and bowing to The Good Witch.  (loud clapping and whistling is heard)

She called me a few hours later.

She knew before I even said so where I was headed.

She did not patronize.  She did not scold.  She told me like it is.

This is what my brain heard, in her words and implied tone.

Settle down lady.  Yes, I know you are a thinker and a studier and searching for answers on this path.  Yes, this news was potentially very very positive in the long term.  Let me unequivocally tell you, you must finish this course.  It is based on the best of our best knowledge, research and protocols.  We are not measuring success by whether or not cancer is present or not in your breast.  We will measure success 40 years down the road when you are an old lady.  We are working on your long term survival.  We never, and I mean never with a capital "N" stop a course of treatment unless the patient flatly refuses, and I would do everything in my power to convince the patient otherwise; or if the patient simply cannot tolerate the treatment.  Settle down.  Keep going.  I hear you.  I'm listening.  Keep going.  Are you listening to me?  Are we clear?  Tell me we are clear.

Yes.  Yes.  Heavy sigh.  Yes.

The quest for certainty blocks the search for meaning. Uncertainty is the very condition to impel man to unfold his powers. ~ Erich Fromm

And impel woman too Erich.  Unfolding my powers under very uncertain conditions.  Thank God I've got The Good Witch as my co-pilot.

May I also say thank you to all of the incredible strangers facing this diagnosis and still undergoing treatment, and those who have graduated, the survivors.  I recently joined two sites, one called The Network of Strength, and the other, CancerConnect.com.  Hello my people. 

Thank you for the messages on that site and sent to my email address.  Thank you Bobbiejayne.  Thank you Busymom.  and others who have posted comments here who have remained anonymous but have walked this path.

And, thank you to all the others in my expanding safety net, who bounce me back up to the tight rope when I stumble.

I'm back up on the rope again, way way up here in the stratosphere, trying to keep my balance and faith and wits, taking one careful step at a time towards uncertainty like I've never known.

Here I go.

Spot me.

Friday, June 18, 2010

Dare I Say It? Miraculous.

So on the off weeks I don't have chemo, I get to meet with The Good Witch.  I knew we would talk more about my PET scan and I had a few questions.  I didn't make it to far into our discussion, which I always look forward to, when I found myself all teary and could hardly talk.  Geez.  She looked worried.  We talked through it, I kept saying it sure feels like I'm going to get my period, cause I'm alternately weepy and cranky, my boobs are so tender and sore, and I've just generally got the blues.

"Welcome to Menopause" was the jist of her sympathetic reply and she reassured me again I would probably not have any more periods.  This is one of the hardest things about breast cancer she remarked, that at the same time you are dealing with the cancer, you are also being thrown into menopause.

Then we got to my PET scan, which as you remember she emailed me a brief sentence or two about my results, basically that there were no other signs of cancer in the body.

Wait till you hear this.

Upon further review of the report, it was noted that there was no glow in Flopsy.

I repeat, no glow in Flopsy.

There should have been a glow in Flopsy like a searchlight at a movie premiere, but there was no glow.  No uptake they call it.

The Good Witch said that after only two chemo treatments this was remarkable and astounding.

No glow in Flopsy.

What does that mean you say?

The PET scan reveals what is happening in the body on a molecular level.  That's why when there are active living cancer cells present, they absorb the radioactive sugar like PACMAN munching down pac dots.  Those "hot spots" glow and signal their presence in a big way.

Although my tumor is still present, there was absolutely no glow, no living cancer cells, just a dead mass.

Dare I say it?

This is miraculous to me, and obviously really really surprised my doctor.

I still don't quite know what to make of it, and it reminds me of those stories where someone asks God for a miracle, and even when the miracle is so obvious, we still don't believe and ask for more.

All I know is Flopsy should have been lit up like a sparkler on the 4th of July, and there was nothing.

Nothing.

Nothing.

With all my heart, I can only believe that this is because of you.

All the love and all the prayers, the times you said my name out loud and whispered it too, the times you thought and sent good thoughts for me, and asked for healing and grace and miracles on my behalf, have altered the course of things.

Like the butterfly effect changing the weather, your prayers and wishes for me have changed the course of things, on a molecular level.

No glow in Flopsy.

Unbelievable.

Oh and by the way, I got my period today.

She ain't going down without a fight.

Is it too late for me to have another baby? 

Yeah I know, now I'm getting greedy.

Thursday, June 17, 2010

Getting Real

Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in the joints and very shabby.  But these things don't matter at all, because once you are Real you can't be ugly, except to people who don't understand.  Margery Williams, The Velveteen Rabbit

Most of my hair has been loved off, my eyes have not yet dropped out, but I am loose in the joints and my house is bordering shabby right now.

But I am getting Real

to people who understand.

It was a good good day.  I got all kinds of extended family love today so I don't know if that's why I felt so good or if I was really feeling good.  Just to be sure, love me like that from now on, ok family?

I stood under a tree and had my picture taken with both of my brothers today.  We have not been in the same place and space for over ten years now.  That is a crime.  As a mother, that is a crime against our Mother whose heart would break if she knew.  Only heaven has spared her our neglect and foolishness.

So not only did I have my brothers together, I got to hang with my sister-in-law and niece.  Later my Dad called, and a little later my nephew Wolfie in Kansas.  I hit the jackpot today.

I have missed my family, especially those who were not here today, but could have been.

Two things I have regretted as a mother.  Not having more children is one. The other?  My kids not having more interaction and time with my family.  I am sorry to say and ashamed to admit in my family we have let all kinds of not good enough reasons keep us apart.  Most of our good good memories are very very old.  I am sorry for this.  Deeply sorry.

I don't think a family is about how many of you there are, or that you all live close by.  It is about keeping a commitment of your time and presence to the rituals and traditions you make together, and giving those memories to your children.

Over many years, we have failed miserably at that.  When Batman was little, we tried harder then.   The loss of our Mother was only soothed by the presence of each other.  Somehow we lost that over the years, and Robin, my youngest, hardly has any memories of us all together as a family.

Family love is messy, clinging, and of an annoying and repetitive pattern, like bad wallpaper. Friedrich Nietzsche

I guess so, but when you get it right, for those moments you get it right and you should never stop trying, it is like coming Home again.

No matter how far or how lost you might have been, its like coming Home again.


Before I get all spoonful of sugar here, let me say -

Hey Tay, sorry about those Celtics baby, and if you had a reality show, I would TIVO every episode and yes, I am going to get myself some gold TOMS.  For those of you not so hip as my niece and I, they are superfly cool shoes and for every pair you buy, they give a pair to a child in need.

Superfly.

My oldest son Batman was not here today for the visit.  Have I mentioned yet my son Batman is a legendary snare player in the making, and part of the world famous world champion Concord Blue Devils Drum and Bugle Corp?  Batman is one of THE nine snare players on this most famous of smokin drumline's.

Anyway, I texted Batman a photo of my two brothers and I standing under the tree in our front yard. 

Batman texted back "Weird."

What do you mean son, weird?

"Seeing you three together."

I wrote back.

"Promise me in your life you will never ever be far from your brother."

"Promise" he said.

Now I can sleep tonight.

Wednesday, June 16, 2010

Blessing of the Bald Lady

There isn't a whole lot to say when the last three days melted into one and consisted of nothing except getting shots, hugging Vonda, feeling ok, feeling terrible, napping, taking meds, and writing you.  Really, I swear, I have spent the last 72 hours doing nothing.

Just moving slowly from one nothing to another.

Well, except this morning, when I went out into the yard to feed my finches and give them clean water.  There were no boys in the house, so no scarf on my head.  Into the garden commando. 

Not far from the finches I noticed two butterflies sucking nectar from the purple liatris that is a three foot high dome in the flower bed, nestled between rambling splashes of pink Mexican primroses. I stepped closer and stood over them to watch in the sunshine. 

Hello butterflies.

They drank their fill, and one of them floated past my head and over the fence.

The other of them hesitated and fluttered around me, as if looking for a place to land.

I held out my hands, palms up.

I saw myself from above, bald head, hands open, eyes closed.

I opened my eyes in time to see a flash of yellow fly past my face then land on my head.

72 hours of nothingness was worth that second of connection.

Namaste.

I bow to you.

Tuesday, June 15, 2010

The Sacredness of Tears

When I was in 2nd grade, we lived in South Dakota for a year.  Cold cold cold baby to a native Californian.  I remember during the wickedest winter months, before crawling under the weight of many blankets, I'd make a neat stack on the floor next to my bed.   It would be right there for me in the morning, my feet wouldn't even have to touch the floor.  Books and paper dolls and comic books all at the ready to be enjoyed in a warm warm bed on an icy winter morning.

Fast forward over two score, and everything I need is at the ready, next to my bed.  Candles and snow globes, damn Trader Joe tissues, phone and ipod.  Bottled water. Cards you have sent me, my journal. Gone With the Wind, poetry books, prayer books.  Two large woven baskets on the floor filled with magazines, my fetish.  A pink bear.  A white and pink lamb. Pens and pencils and post-its.  My netbook. Nausea meds and throat lozenges.  A nail file and polish.  Lip balms and lotion.  Reading glasses and a small pocket calendar so I don't forget what I probably would forget if not for the calendar. A small photo album.  and a small handmade felt covered book with alphabet beads sewn across the front that spell "good thoughts."

When I write at night, and talk to you, I look at these things, and I feel content.  Like a mouse in her house.  I have what I need.

Not getting what you want is sometimes a wonderful stroke of luck. The Dalai Lama

I am thinking about this tonight.  The things I desperately wanted and did not get.  The things I never wanted and learned to accept.  The things I have taken for granted that still graciously bless my life every day.

I wish I could live this life better.  Fearlessly, graciously, openly living this life better.

I often fail where I would most like to do good.  I love and it goes all wrong.

An act of love that fails is just as much a part of the divine life as an act of love that succeeds, for love is measured by fullness, not by reception.  Harold Loukes 

Thank you Harold.  For all the times I loved and it came out all wrong, this I know for sure, I have always loved with fullness.

Some people are harder to love than others.  Some people don't want to be loved.  Some people don't believe they are lovable.  Some people, if you try to love them, will arm themselves against you.

I guess I read too many fairy tales, saw too many Disney movies, believing you just have to try harder and love will conquer and cure everything.

Sometimes you just have to love from a distance, or send it to the moon and hope it finds its way into that person's heart while they sleep.  Or gently lights on them like a leaf in the Fall.

I don't think, even when it does not succeed, that love is ever wasted.

Love is never lost.  If not reciprocated, it will flow back and soften and purify the heart.  Washington Irving

I have a very soft and purified heart.

When I went to get my shot today, they were worried about me.  Vonda is used to seeing me strong and funny.  She is not used to seeing me fragile like yesterday.  She obviously told Kitty because they double teamed me today.  Don't think I don't know what you two ladies were up to, giving me the love and making sure I was OK.

I'm OK.

I just had to cry a lot yesterday, about a lot of things, some to do with cancer, some not.

This Washington Irving really gets me.  I would liked to have known him and hear him read the things he wrote.  Listen to this one.

There is a sacredness in tears.  They are not the mark of weakness, but of power.  They speak more eloquently than ten thousand tongues.  They are messengers of overwhelming grief...  and unspeakable love.  Washington Irving.

You remember him I know from sophomore English, he was an American author and wrote "The Legend of Sleepy Hollow" and "Rip Van Winkle" among other things.

I'd like to go to Sleepy Hollow, New York, some day.

I will sit near his gravestone in the cemetery there and read out loud to him about the sacredness of tears.

Sometimes you just have to cry, hot inky tears spilling down your face like words, when words will not do.

Monday, June 14, 2010

Rain Rain Rain

The worst thing about fear is what it does to you when you try to hide it.  Nicholas Christopher

Hello and thank u who wrote a little poem that ended with rain, rain, rain.  I don't know how to display your comments better, some of them come in on old posts, so unless you go back in to those, you would not know about some of the amazing things coming back to me.

Graduated members of my new sorority are coming, thank u for the tips, and thank u for the hope.  Barbara, 6 year survivor of colon cancer, thank u. You made me cry tonight, joyful I resonated with u, hopeful to hear you made it out of this place.  Thank u so very much.

Rain rain rain.  It was raining in here today, even though the skies outside my bedroom were clear.  I was tired today, a lifeless tired, and sad.  very very sad.

I usually go to get my shot very early in the day to get it over with.  Today I didn't make it till late in the day.  When I arrived Lady Grace greeted me "Honey, they been looking for you and asking for you today. Go ahead back, they are waiting for you."

I walked back, Vonda was behind the counter.  She looked at me with relief.  "Where you been all day girl?"

We hugged.  She lead me into the exam room, and scampered off to find the smallest needle possible, cause that's how she rolls for me.

I sat down and started to cry.  I don't know why, I guess I do, it was a rough day, and I was tired, and I didn't feel good, and I was sad, and I need my Mommy, and Vonda is my girl.

I felt like a five year old waiting in the chair, I tried to wipe my eyes.  I didn't want her to see.  I am always funny when I come in.  I don't cry.  I put my shades back on.  It didn't work.

"Girl where you been all day, I've been looking for you..." and she saw my tears.

Here I am.  Here I am.  Feeling so small and sad today.  Here I am.

She does not know my mom died of cancer too.  My mom died of renal cell cancer at the age of 46.

I am motherless just like you Vonda.

Vonda shocked me today, she has only worked at the cancer center since March of this year, just a month before my diagnosis.  The way that girl walks around there, I thought she had been there for years.

She said "I will help you get through this, and you are helping me get through this.  I am new to this.  I am not good with change. We will help each other."

Yes girlfriend, yes, we are helping each other get through this.  Motherless.


Most nights when I write, Robin, the twelve year old, wanders in and plops down on my bed and hovers over me as I try to write.  He is almost pesty except for the fact that he is so cute.

"Honey, you know I can't write with you here..." I whine.

"What, am I invading your little bubble?" he says, pantomiming the dome over me, looking a little hurt.

This morning, as he ate his breakfast half asleep, sitting close to me, I started to talk and he says "You are invading my waffle bubble lady."

Noted.

I am on a journey I did not plan and you can't look it up on Tripadvisor, or check out where to go and not go on Yelp.  I was drafted.  I was unwilling.  I am still surrendering to this plan for me.  Some days far more willing and noble.

Not so much today.

There is still a part of me waiting for someone to come get me.

Rescue me.

Take me from here.

No one is coming.

I know this but I don't have to like it.

May I honor my confusions as my path.

I pray that when I am most lost, a gift will be placed in your hand.

Love your life.

Sunday, June 13, 2010

Wet Noodle

In the beginning, there was so much to talk to you about, all that was happening to me, all that they were doing to me and just absorbing the MAGNITUDE of this path.

It is quieter now.  The weeks of chemo and chemo-not going by, the waiting to see what will happen each day, waiting for the good days.  It was harder to live them, but easier to write about when most of what I had to tell you was tests and shots and drugs and side effects.

Tonight you are stuck with a me with not so much to say.  Just a couple things.

Day three after chemo.  Had another shot this morning. Spent most of the day quiet.  No nausea or anything today, just a body ache that left me as energy-less as I have ever felt.  Like when you've spent too long in the jacuzzi and you get out and you're all wobbly like an over-cooked egg noodle.

Beef stroganoff with buttered egg noodles was my favorite birthday dinner as a kid.  My mom didn't even need to ask.  She just knew.

When was the last time you had a good cup of coffee with a piece of doughnut dipped in?  It had been way too long for me.  I prefer an old-fashioned glazed and a cup of coffee with way too much cream.

I visited my hair today.  I still have it.  I wanted to donate it but you can't donate hair that has been color treated in any way.  It's in a plastic bag.  There is a lot of it.  It looks dead.

Any suggestions what I should do with it?  I thought about giving some to my finches to down up their nests. Give me some ideas, will u?  I think I read once that human hair is a good deterrent to keep deer out of your garden.  Any one have a problem with deer?

I was thinking, as I head into the abyss of the "week after chemo," could I find a way to measure differently and make the focus the good that still happens despite it?

Like Where's Waldo?

Sometimes that tricky little son-of-a-bitch was hard to find, but he was there.

You just have to get focused and look really really hard, next to the fire hydrant, under the tree, with a chemo port in your chest.

Help me.

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?
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