Relay for Life

I am still alive (although barely). But to quote a line from a favored movie – “I ain’t dead yet”. I keep trying to live. I have a wonderful husband, 2 rambunctious girls, 2 older children finding their own way in life, two loud dogs, two shaved for the summer Persian cats, and a goldfish that I think will outlive me.

So… Guess what time it is: yes……it’s Relay for Life Time.  Okay…..for those who’ve gone through this before……and yes, I’ve lived for 6 years since my initial diagnosis of breast cancer, so I can imagine there are quite a few people that usually take a snooze while reading this.   So take a nap…..I’ll nudge you when it’s time for you to wake up.

Bainbridge Island used to participate in the American Cancer Society’s, “Relay for Life”. I participated in the program to help raise funds for cancer research. And although I did not make very much money, I would walk at least a mile or two with friends.  What used to be a crowd of 30 or more, complete with magnificent cellists playing music for myself and other walkers has dwindled to a few – they help me to keep going.  For me cancer has always been the most painful at 10 PM.  I figured if I could walk a mile at 10 PM then I could keep going and fight my cancer.  Unfortunately due to high costs of the BHS track and other liabilities, the Relay for Life slipped through Bainbridge Island hands. The event then started to leap frog from city to city, Poulsbo, Silverdale, and Bremerton.  I’m not sure where the event is held today, for all I know it has passed Gig Harbor and made its way to Tacoma.  Since I could not ask my friends to get on the 305 and start heading south, I asked my friends to “jump the fence” with me at Bainbridge High School.  In days of yore, I had cello friends who showed up to the played Bach, Ode to Joy, even I played Twinkle, Twinkle, Little Star.  I had a friend who flew in from Toronto.  I had even a dreaded IRS agent or two, but don’t hold that against me. So…..NUDGE, NUDGE wake up.

Usually my invitation to join me on my walk is during mid-summer, when ice cream is cranked out and hot dogs sizzles on the bbq.  However, I’m not doing well and have been undergoing radiation throughout the summer and instead of hot dogs sizzling, my spine has been sizzling with hopes the numerous tumors on my spine will fry away.   I also usually send my invitation at least a good two weeks before I jump the fence.   However not this year – it’s been difficult to live lately (but I have two young daughters and husband that still need me for a few years yet - ya-da, ya-da ya-da).

 

So I invite you to “jump the fence” at the Bainbridge High School, on this Saturday, August 23^rd, 2014, at 10:00 p.m……….yes, I do mean p.m. Nina, Bridgette this means you.   (when the stars are out).  I might have a gift for the person who travels the farthest to walk with me – a beautiful gold necklace complete with pink sapphire designed and made by me – I make jewelry, I got bored just staying home.  Please bring the children, it’s the last thing they can do before the end of summer – we can make them walk backwards around the track.  I should warn you though……it’s doubtful that I’ll walk more than a lap although sometimes the spirit runs through me and I’ve walked over a mile.

Joan Judge

p.s.  usually I ask for donations to Swedish Hospital Women’s Cancer Group, or something - however at the last minute I changed my mind.  Send me an email should you wish to donate funds to a favorite cause.

p.p.s.  I’m usually more upbeat, but a dear admired friend passed away this week.  Not of cancer, but just the passing of time from having a joyous life full of love and laughter.  I know I should be happy for her and am, but it was so nice that on occasion she was able to hold and squeeze my hand giving me strength to go that one more mile.

p.p.p.s.  Please follow my story at http://justjudge.blogspot.com/

Sent from my vacuum cleaner

Lesson for today

Math lesson for today.   3 x 7  does not equal 20.   So what does it mean?  Now I could breakout into my best "Sound of Music" voice......you know the song......"let's start at the very beginning - a very good place to begin - when you learn to read you begin with A, B, C. Hold it, hold it!!!!    Let's put the breaks on this 1964, light blue, rust colored "VW" Bug.

How about I turn into robot Joan and just supply definitions.  You can draw your own conclusions or burst out singing your own favorite musical.  (However you need to let me know what musical has got your toe tapping).

In July, I was diagnosed with three new tumors on my spine.  By October, my three radiologists where telling me my tumors each had grown by seven new tumors up and down my spine.  The docs couldn't quite agree as to what the total growth was and Dr. Goodman and I were frustrated and went with what we could see on the PET/CT.

I'm now on cytoxan and taxol.  I was on taxotere a synthetic of taxol, however I developed ulcers on my hands, in my mouth and in my bladder.  Basically pure pain.

And here I am, no hair, massive pain, losing weight (not to bad of a thing), worried to death about my family, would kill for a goodnight sleep, and trying to figure out if I have enough money for Christmas

Just another day in my life........and yes, the tears are rolling down my cheeks


P.s. I am going to have a jewelry open house on Saturday, December 7th from 3 pm to 9 pm or so.   Champagne, yummy ti

Riddle me this????

A very brief thought or short riddle.   Just to keep you on your toes.  (Hee, hee, hee)   3 x 7 does not equal 20.  So what does 3 stand for?   And 7? And do not forget 20?   What do they mean and do they mean anything.  

Meanwhile, I no longer sleep and have a child who has a hard time being in the same room as I.  

Well, I’m a woos!

I’m on a new chemo; the drug is only two years old. FDA approved.   It’s a fast acting med.  It was originally created for Pancreas and Renal cancer, however serendipitously the scientists discovered…….a cure for cancer.   No, I wish.   The scientist found out that the drug works on advanced cancer patients who develop rapid growing and large cancer tumors in the bone.  Great, I’m so lucky to be one of the few, however the more I read about it, the more it becomes interesting.  Is going to cure my cancer, seriously……..NO!  But hopely the cancer won't break my bone and call me names.

So there is  good about the drug…..it’s powerful and if I’m lucky it will kick butt of those nagging tumors in my spine.  Once again, they never tell people that bone cancer hurts.  But I’ll tell you, IT HURTS.  The drug dark side…..sound scary music from ……Jaws, no not gruesome enough.  Halloween, no, no, no that movie has a happy ending.  Psycho ……perhaps, right now I feel like a have a million knives in my mouth slicing and dicing.  I was told the first thing to go would be taste within five days and blisters will start in mouth, begining their march down my throat to my stomach.  Plus, the stupid medicine has a mind of its own.   For some reason, the drug will think my lips, my chin, my cheeks, my eyes, my forehead have been mined with cancer bombs.  When I’m not gargling with warm salt water mixed with lidocaine. the cancer will begin it’s stealth mission.  The cancer will creep out of my mouth (with my luck probably when I’m asleep snoring) and begin to blister my face.   Oh yes, I can feel the pain already and can imagine the people in the grocery store stampeding out the door trying to get away from an alien in their midst.

So now I know you’re all scratching your head with the question – why do I feel like a woos.  That’s easy.  I’m deathly afraid of any kind of mouth pain.   I hate dentists…..yes, I know they are much maligned and are really super heroes, defenders of teeth, tongue and banishing the evil villains in the guise of cavities and (whispered softly) bad breathe.   I have a bad tooth from my on going chemo.  Plus after my first go around with hard chemo, I had to have my front teeth replaced.  I keep my teeth and the bad tooth clean and wait until I can come up with $3Gs to get it pulled.  It’s been okay up until I started my new chemo regiment.  My mouth pain was off charts,  I even reached out and called my dentist to see if I could get in.  Problems……she’s no longer with the firm (and we wish her well, this is a recording).  Plus, I still have a sort of small bill that has been yet resolved…….don’t look at me, as far as I’m concerned it’s a billing problem and they need to reinvoice the insurance company.  And yes, I’ve given them my dental card over and over.  So now I have mouth pain…..Ouch.   I have blisters on my tongue……Ouch.  My gums are beginning to swell with mountains of blisters……Ouch.   And my tooth is killing me.    ……LOL…sorry, let me pick myself up off the floor.   I made a bad faux pas , I went  with cancer humor there.    

So I’m a woos.    Every three hours or so I go brush my teeth softly, rinse and swish my mouth with lidocaine  and lean over the sink crying that I don’t know if I can do this.  God,  I hope so.   Oh the plus side…..I’ve already lost five pounds and no it’s not from dehydration.  I’m drinking plenty of Vitamin Water and regular water.  It’s because another side effect is taking effect,  loss of appetite.   Soooooo  woo-hoo.  

It’s time for me to go brush, rinse, and cry.  Ni ni.

 

Well it looks like I have cancer.......again.

So my “D” Day or “C” Day has come and gone.  And yes for just a minute or hour so, I’m delaying giving you the results of my fun filled tests that oh so warms my heart.  (Please note – that is sarcasm).  I probably need to do a quick recap for those who are uninformed as to my current clinical situation……

So yes, I have cancer.  (I can hear my friends think to themselves, Geez Louise, what are you going back to the beginning of this escapade?  Do we all have to go through 5 years of whine, whine, whine?   Get on with it.  If the newbie’s don’t know what’s going on – tell them to read your blog from the beginning at http://justjudge.blogspot.com).  Okay, okay how about I start from hmm……this past January.

In January, I went to see my docs to get my favorite chemo cocktail.  I’ve been lucky; so far the drug has kept my cancer at bay.  Anyway, let’s just stick the facts.  First thing Dr. Goodman said – Had you have your flu shot.  No, I don’t believe in it.  I think your body should try to fight the virus on its own.  Nope – you need a flu shot.  Laurie, get the needle.  Blood counts look good, no lumps, other numbers great.  See you in March – we’re going to run the usual barrage of tests.  Do I have to have the shot…..YES.  Laurie appears with the needle.  This may hurt for a few days, you might also get a fever – let us know if it goes over 101 degrees.  Ouch, that hurt.  Dr. Goodman pops his head in……BTW, Happy Birthday.  You’re a month early.  Better early than never.  Arh, Arh.

So guess what I got for an early birthday present – give the person in back who said the flu a million dollars.  Yes, I got the flu mixed with my usual malaise I get from my chemo cocktail.  I went from feeling bad to really feeling bad.  Snotty nose, sore throat, fever (but never over 100.8), chills and cough had become my friends.  Next thing you know, Hannah has it, Emma grabs from her sister, Dylan gets it (although he says he picked it up in S.F. before coming up here).  We’re buying stock in Kleenex.  I feel like a commercial for Ricola and Vicks cough drops.  The germs are swilling around our house, poor Rainer is playing nursemaid to us all until he himself finally joins the party.  Hack, hack.  Cough, cough.  Good thing I had plenty of frozen soup made last fall in the freezer.  The children got well first.  It’s amazing how resilient they are.  Rainer and I are taking turns in visiting our GP doctor.  Cough medicine laced with codeine as the cough turns into bronchitis for Rainer, pneumonia for me.   Rainer gets better, I get worse.  I’m hacking up a lung and he’s off to work to escape my loud seal calls.  I’m even forced to do 10 days of in prison – the dreaded bed rest.  Yuck. 

March rolls in…..I’m still hacking.  I tell Dr. Goodman that I’ll never have another flu shot.  I’ll spare you the details of my torturous tests.   March results…….hmmm.  You’ve broken your back.  Huh?  It looks like you broke your clavicle right here – could be from your lower bone density but more likely your cough.  He shows me the scans and I watch my sternum react to a cough and yep it lights a fierce orange.  Looks like it’s beginning to heal.   No lifting, gardening, etc.  Your sternum is hot but that’s probably from the cough.  However we’re concerned about up here – he scrolls the movie video of my body to some lymph nodes above my lungs near my heart.  He’s pointing at pin pricks.  I can barely see the tumors; they look like small stars in deep space.    Hmmm.  Doctors converse back and forth.  (I’m a case study – they even have my DNA and everything).  We’re going to double your oral chemo, plus increase today’s chemo cocktail.  We’ll start doing pictures every two weeks to monitor the growth.   Shouldn’t we start hard chemo (translation – loose hair, loose 80 lbs, throw up every 20 minutes, don’t sleep for fear that you’ll never wake up).  No, once we’ve used a hard chemo drug you can’t have it again.  Let’s tackle the problem with what’s been working.  Okay – worst case scenario, what happens if it keeps growing?  Cluck, cluck, my doctors sound like chickens as they talk in Latin.  Open heart surgery, crack chest, scoop out cancer, remove lymph nodes here and here, Goodman points to the pin prick stars.  Then we’ll tackle with hard chemo.  I’m pacing now, I feel like a trapped tiger.  The room seems smaller, my ears are ringing.   Deep breathe.  Can’t you radiate the cancer?  No, you can’t radiate the heart.  Already the team is breaking up, my twelve doctors are off to other patients.  Conference phone hung up.  Three Radiologists sneak out heads together like the three witches from Macbeth.    Dr. Goodman is manhandling me out the door, giving new med orders to Laurie, telling Jessy my schedule for the next few months.  My ears are still ringing, but you put your feet one foot in front of each other, walk slowly and paste a smile on your face as you walk out to where your friends are waiting for you.

Fast forward to July……Confidence is high.  Yes, I still have the hacking cough.  My recent visits to my internist ends with let’s see what shows up on the scans.  Cough, cough.  I express confidence, however know the cancer has spread to my lungs.  Three day torture diet and no homemade apple pie that I made for the 4^th, I’m ready to hear the news.  There he is……Dr. Goodman.  No phone calls this time, good news I think.  So how’s it going?  I still have the cough.  Don’t know why, you’re lungs are as clear as the blue sky. Shoulders drop, relief spreads.  The tumors near your heart haven’t grown at all.  They are still showing hot; however they seem to be fading.  I think I feel happiness beginning to bloom in my heart.  However…….I hate that word.  You have three tumors on your spine.  He pulls up the scans and shows me the tumors, orange basketballs – well maybe grapefruits (I know, I know grapefruit are yellow but you get the analogy).  Plus this lower tumor has jumped from your spine to your pelvis.  I guess that cancer cells were partying hard and didn’t have enough food to drink or eat – or perhaps they decided they wanted a dance floor where they could get down and boogie.  I’m pacing, back and forth, back and forth.  Dr. Goodman takes my hand and gently puts me back into my seat.  So what do we do…….

Enough of the tragedy that plays out, you do not need to hear all the gory details.  I’ve added a new gruesome mix to my chemo cocktail.  I guess the good thing about this one is it doesn’t make your hair fall out.  (However, one of my other drugs thins my hair).  It acts fast…..we should begin to see some results within 4 weeks. It’s been 3 days on the drugs and I can already feel the effects of the new chemo settle in.  I have a small rash beginning to bloom on my hands and I’ve got a blister in my mouth.  According to my nurses standing guard over me and refuse to give up on me, DO NOT EAT ANY RAW FOOD.  I guess a small salad will put me in the hospital for a week.  (I was sort of okay with this until Rainer reminded me tonight that translates to no more guacamole and chips – grrr).

So that’s it.  I’ve got cancer……again.  Am I admitting defeat?  NO.  Hey, I can do this.   Besides, if I loose 80 lbs, I'm going to the Caribbean - I'll be hot.

 

p.s.  To those who live on Bainbridge Island, I’m going to be jumping the fence on Saturday, July 20^th at 10:00 pm.   I intend to walk the track at the High School.  (They used to have a Relay for Life put on by the American Cancer Society here – but it’s gone now)  Please feel free to come hold hands with me.  Carrie and Nina you’ve walked with me from the start of this, I’m sort of hoping you’ll show up.  Bring your kids, my kids like to walk backwards and usually lap me over and over.  Last year the stars were so bright, no rain, no fog, just lots of laughs.  I’m trying to convince Emma to play her cello as we walk……but I’m not sure she’ll do it or not.  Perhaps she’ll play if someone plays French Folk Song and allows her to play the harmony. (She likes to show off lately). 

p.p.s.  To those who don’t live here and are feeling guilty……heh, heh….why don’t you make a donation to “Swedish Hospital Women’s Cancer Foundation, 801 Broadway, 5^th Floor, Seattle, WA  98122”.  Just tell them that I sent you.  I owe Swedish a lot (beside money, arh, arh……it’s late and I’m getting punching with a side of nausea. )  Swedish makes sure I keep on living…..for my husband, for my children both near and far, for my parents, for beloved friends far away and for all the best  BFF’s a girl could have who live on Bainbridge – they are all pretty great.

So excuse me……I get to go slather cream all over my face and hands…….preparation so I don’t blister too bad.  Ni ni all…..See you on Saturday, July 20^th at 10:00 p.m.  No worries if you can’t make it.

Oh……one more thing my new meds are outrageously expensive……go to https://www.etsy.com/shop/OctoberSkyJewels and buy stuff.  Also, I’m going to give the Lynwood Market another shot, hopefully no rain.  I’ve got some really cool stuff, if nothing – go for the summer hemp bracelet, it’s a hit.  The Lynwood Market is sort of like the downtown farmers market, just cheaper and on the south side of the island.

The Crazy Lady still stuck

Hmm…..I can’t remember if its day 6 or 7 of enforced bed rest.  Originally, I was given a week – however they (the people in white coats – who come to take you away, hee-hee ho-ho) have extended my prison term to 10 days.  Hmmm let’s examine how I am, fever – nope, sore throat – nope, wheezy breath – in the evenings, hacking cough – okay, okay I give – still hacking up lungs at night.  Grrrr, I foresee that I’ll be given an additional sentence ……but I want out of here.  Now the whining starts.  First, my family completely ignores me (as if I’m invisible or something), no food or drinks for the token ghost upstairs (again – whining, it peeves me when I can hear them munching down on chow downstairs – especially when Rainer made his chicken last night, chicken, parmesan, gobs of garlic, stewed tomatoes, zucchini, a little curry, fluffy mashed potatoes with butter – having been ignored I’ll day, I’m hungry).  Laundry is still piling up, you think my family would start washing their clothes……but nooooo, I just keep hear them in the laundry room sorting through the dirty clothes to find shirts with no stains and smell relatively okay.   I can only read the newspaper five times before I’m snoozing with sheets of newspaper tenting over my face as I’ve drop off to sleep again. I’ve missed my Emmie’s school music concert (but she did look fab before she left – clean glasses, shiny long red hair, wearing a snazzy short sleeved black tunic, black leggings, and extremely hip black suede boots).   As some you know, Emma is a tomboy opposed to an actual girl, she prefers ragged jeans, t-shirts, muddy boots, and of course her coat (if I let her, I swear she’d wear it 24 hours a day – Recently, I finally got her to keep the hood down so I could see her face).  I sometimes forget how beautiful she is.  Her older sisters have always been stars, but I have a feeling little Emmila just might outshine all of them in her own way. 

Sorry, took a mini break there – Dylan showed up with a small bowl of beef stroganoff (yummy family recipe).  Did anyone come to eat with me? No.  I turned the TV on and played america’s favorite pastime, flipping channels on the TV.  What’s that old Springsteen song, “57 Channels and Nothing on”. Watched the end of Sherlock Holmes (the Downey one), the end of Hello Dolly (foolish pleasure), news, and then started watching the movie “Out of Africa”.  Can’t you just hear in your mind Meryl Streep saying, “I had a farm in Africa”?  I love the movie, but just hearing the music I started to sob.  I turned the TV off.  She dies, you know. 

So I’m typing – was going to interest my readers with my Tucson story, but I’ll save it for another day.  I just took some cough medicine and have a throat lozenge swirling around in my mouth.  Pretty soon, I’ll have to actually get under the covers and pretend to sleep.  So here, I’ll bore you with what’s going on around me.  I’ll work backwards.  Emma is in her room.  Her room is actually clean; I put my foot down and threatened her with sanctions.  She’s on her computer. She’s been starting to program little cartoon videos that she’s loading up on YouTube.  Her characters are always from Erin Hunter’s Warrior books – cats with courage.  Hannah, I know she just finished her homework.  She was downstairs earlier in the day watching “American Idol” with her dad – I could hear her laughter.  They love that show……not my kind of entertainment.  Her dad is getting worried, he only has three more years and then she can try out for American Idol.  Let’s hope they cancel the show.  I know she can sing, but I much rather her to stick to her plan.  What’s that you ask……my daughter wants to go to Yale University – she wants to be either an actress or an Ichthyologist (fish doctor), she’s had this plan for years.  My little steamboat, although on more than one occasion – the mean mom comes out when she whines about doing homework – I say those fateful works.  Okay, if Yale doesn’t mean so much, you don’t have to study so hard.  But Mom, she drags my name out.  It’s fine that you don’t want keep your grades up for potential scholarships (The hard truth there is, now that I’m no longer a VP –we’ve got no money for college – if Dylan can get money, so can she).  Okay…..I’ll study or I’ll play the piano…….isn’t the guilt great. Guilt is the only weapon I have now to use against her.  She’s heading into teenager mode.  Remember way back when, it’s when you certainly didn’t want your mom around and 90% of the time you didn’t like her.  Dylan’s home, he graduated from college last May (with honors – I’m grinning when I say that).  He’s been looking for a job since then…….well, really, really looking for a job since October – he went down to visit his father in SF until Christmas.  However from May to October, you could find him and his dad hanging out at the ballpark watching the SF Giants baseball team do their thing.  No jobs in SF, although I think he was hoping about a potential contact from a friend of a friend.  He wants to be a journalist – so if you know of a job……sent him an email.  One other reason, he’s hanging around up in the gray, rainy, big Northwest.  His girlfriend has a job up here…….she’s wonderful, ahhh, isn’t that sweet.  Ashley, Ashley…..she’s radiating happiness with her new beau up in the wilds of Michigan.  I need to send a package to her; perhaps I should throw in some yarn and needles.  She can knit as the snow piles higher and higher.  J

Rainier (remember rhymes with finer) has been recording music on his computer all weekend.  He laid down some guitar parts, added a base, cut in some piano licks. Jeez louise, he even was recording music on my cello – which just kills me that in no time he plays even better than I do.  Gosh all mighty, I wish he’d just join a band or something.  Unfortunately, my wanna be rock star just turned fifty and loves to play those golden oldies from the 70’s, 80’s, and perhaps a 90’s tune here or there.  If nothing else, I wish we could build the garage and then I could throw him outside the house when he wanted to pound out on his guitar

And here I am, time is fading.  And no it’s not my bedtime but I might actually get under the covers instead of sitting on top all day.  I see a favorite book next to my nightstand.  I think it’s time to re-read it again.

Ni ni all……from the crazy lady sentenced to bed rest. 

The Flu

So it’s the beginning of day four of doctor imposed bed rest. This year’s flu is not very nice.  I went in for my monthly chemo cocktail and my doctor said I had to get a flu shot.  I receive both my chemo and flu shot on January 11^th.  I have been sick ever since.   I was rather stupid, instead of resting and getting better I just kept playing supermom.  I mean I’m the Mom, who else is going to do the stuff I do – being a taxi service for my children’s escapades, doing wash, doing dishes, going to the market picking up enough food to feed five hungry mouths, feeding our goatie girls, dogs and cats.  (Sorry I don’t feed the gold fish, he’s been with us for nearly 10 years – personally I wouldn’t mind to see him floating on the on the bottom, but Emma and Hannah love that fish) Next thing I knew I had a deep hacking cough, wheezing due to fluid beginning to fill up my lungs, fevers, chills and achy body.  I finally gave in and went to see my doctor.  Tisk, tisk…..I need to run some test, she says.  Once again, I went thrqu my favorite things, tongue swabs, needle pricks, blood drained. I was given the choice of either three days in the hospital or ten days of bed rest.  So after a long day of intravenous antibiotics mixed with a 1000ml bag of saline solution for dehydration, I chose the bed rest.  I’ve been to that prison called the hospital.  The hospital is nightmarish.  First, they (the orderlies dressed in blue) show up every half hour to hook you up to the blood pressure machine (which is worse than the hug of python), you’re your temperature, measure and empty your bladder bag, and just make sure your still alive, your nurse showing up every hour doing double duty of blood pressure, pulse count, giving you little cups of funny colored pills, interns pretending to be doctors while they experiment on you,  and handsome residents who know the end of their midnight duty is just about done.

I know, I know, I haven’t been writing much lately.  You’re wondering what in the world is going.  I thought she had cancer and here she’s writing about the flu.  Yes, I still have cancer – I’ve got new tumors on my sternum and a particularly nasty one just above my right lung.  I’m a walking cancer monster, shoulder, sternum, ribs, and hips.   Lord almighty, the cancer just keeps finding nice and tasty bones to munch on.  Plus, I’m tired of cancer.  I’ve been on a sort of a vacation from cancer, translation, no chemo for the month of February.  So I’m sort of peeved that I’ve been ill with the flu for nearly a month.

I’m working on getting my game face ready.  I’ve got a nice new tumor on the right side of my chest opposed to the left side.  (Well that’s funny – I’ve been leaning to the left for years and years  and now they want me to lean to the right…..sorry, no can do, Go democrats  – Cancer humor).  My doctor will take a slew of new tests on March 11^th.  However, I’m pretty sure I’m going to go from chemo light to chemo heavy.  I’ll go from thinning hair to no hair, being able to eat great pasta loaded with tomatoes, spicy sausage, and garlic to food tasting like metal and pulling out the pink bucket so I don’t have to worry about making it to the bathroom.-

So instead of going to a Jewelry Show in Tucson (I’ll explain later), going to Florida and staying at the Ritz (aka D & H condo, right on the water in Palm Beach), trekking down to LA to finally take my kids to the land of wonder – Disneyland and spend time drinking wine with my dear friend.  I’m stuck on bed rest for at least 6 more days.  Boo-hoo.  Needless to say it’s killing me as I watch the laundry mountain grow higher, and haven’t been to my knitting group and bible study group for which seems like years.  Grrr.  I hate the flu, however I guess the good thing about it is…….nearly everyone round me seems to be getting the flu.  I guess it’s nice to be a part of this terrible click call the flu – now where’s the Kleenex and cough syrup.

Relay, Relay......

Hmmm……I can hear you thinking…..   I didn’t receive Joan’s annual sob story about her cancer.  It’s not in my spam folder (although I do think some of you wish that it would or will just go there).  You don’t think she croaked or something…..  No, no – she said last year that the docs had given her at least 24 months.  And I know that she said that she would do the “American Cancer Society’s Relay for Life” come hell or high water.  Hmmmm……

Well, you can quit your humming.  I’m not dead yet.  (Although for Christmas, I got 5 new shiny tumors – 4 in my spine and 1 in my sternum).  Yes, I’m still having my wonderful, monthly chemo visits.  Plus I also got to try out a new form of radiation at Christmas time.  I had 4 treatments, 4 days, 90 minutes each day instead of 80 treatments, 80 days (of schlepping back and forth on the ferry), 4 minutes each day.  The new form of radiation called “Cyberknife” was developed by those incredible doctors at Stanford.  Gotta love them.  The only down side is that I am and will suffer from radiation poisoning for a year.  And while the tumor on my sternum is reducing in size, unfortunately the tumors on my spine are just sitting there, not getting bigger nor getting smaller – just giving me a real “pain in the back”.   So how do you like my annual sob story so far?

So let’s talk about the “Relay for Life”, what’s up with that.  Unfortunately this year the “Relay” is happening off island over in Poulsbo…..and yes, I probably could go there….but - I’m a stinker.  Remember, I always do this walking thing at 10 p.m. when my cancer pain is the worst.  And believe it or not, I just don’t think I could subject myself to some more torture.  Soo…..I’ve decided while I may not participate in the “Relay”, I am going to walk the walk, so to speak.  This Saturday, July 14^th, at 10 pm, I’m going to go to the High School on Bainbridge, jump the fence, and at least walk one lap around the track.  I just want to prove that I can still walk at least once around the track (although Rainer’s been teasing me - perhaps I should get a walker to aid me in my quest).  I am living with cancer, yes I tick down a little bit more with each passing day but I just want to make sure that I am still …..alive.

Now I’m not expecting those from far – i.e. East Coast, San Francisco, Florida, Sacramento, Rimerman people, and any one in between to hop a flight and hold my hand while I walk a lap.  However, if there are any islanders who want to also “jump the fence” and walk around in circles – please feel free to.  Although, I’m pretty sure we’re not supposed to be on that track at 10 pm, and of course we could all be arrested, but you only live once.  (Excuse me while I pick myself up off the floor – I fell out of my chair from the cancer humor).  Bring your children, bring your flashlights, bring your smiles and be glad to be alive.

Just a little bit more reading and then I’ll let you dump this email into your garbage.  Now for those of you who are feeling guilty or are just looking for a tax deduction, I have a suggestion for you.  Rather than plunking down your money to the American Cancer Society, I invite you to forward a donation to “Swedish Hospital Children’s Cancer Foundation”,  801 Broadway, 10^th Floor, Seattle, WA  98122.  Just tell them that I sent you.  Swedish is a remarkable hospital.

“Relay” next year?  Not sure, we’ll just wait and see…..I think I can make it another year.

woo-hoo

Woo-hoo!! Did they find a wonder drug that will cure my cancer. Nope. Did I win 90 million in the lottery. Nope. Did I find $8,000 needed to pay my mortgage company. (I really could use it because I don't want to loose our house) Nope. Has my husband come home with a bouquet of long stemmed midnight red roses. I wish, but nope. Have my children actually cleaned their rooms (I think Emma is the keeper of forks and I wonder if Dylan and Hannah have actual rugs because all I see is piles of dirty clothes). That would be a heavenly miracle - so that too is a big NOPE. My woo-hoo is that I don't have to have chemo this month. Yippee! No red pea, no glowing in the dark, no joint pain that cripples your spine. No metal taste in your mouth. My platelit level is really low - under a hundred. Do you know how wonderful it is not to have to deal with needle pricked, wasted time catching the ferry and driving to the hospital. I am a happy camper. Of course my body continues it's loosing battle with cancer. But for this moment I am happy. Now if we have sunshine instead of rain - I will be in pure bliss. P.s. now if there is anyone out there that can help us with our mortgage - perhaps you could adopt all us - two old adults, two young whipper snapper adults, two girls going on 21 and 2, two dogs where the alpha dog is a miniature dachshund, two cats that need bathing every month, two Nigerian dwarf goats good for eating pesky berry bushes, and one fish - it used to be two but Olive died last winter. And as hard as I try to kill Bubbles she's over 9 years old she just keeps going like the energizer bunny. Or you perhaps put in a good word with .... Oprah, Bill Gates, even Bruce Wayne aka Batman.

My back hurts. Ha, your back - my knee.....

Can’t sleep, my back is killing me.  And I mean that literally.  I can hear your words already….hold on, you haven’t spoken in months to the aliens from another planet that read this drivel.  (Although I really don’t think of it as drivel, more like a nice scenic drive through the thoughts on my life).  I know, I know…..you want to know if I’m dead or alive and everything in between since my diagnosis of new tumors last October.

I promise to try and recap in the fewest amounts of words, but don’t hold me to that.  You know me, sometimes my mind wanders and the next thing you know is that I’m talking about gray rain and of the bright warm object that sometimes shows up in the sky.  It changes the entire gray surrounding you into vivid greens, shocking pinks, laughing yellows, fiery reds, and even some purple and blues appear in the sky.   See what did I tell you……waxing poetic.

….so where did we leave off.  Oh yes, I remember.  In October, during one of my ritual exams – starving yourself of caffeine, sugar, milk, and yes even cheese, then being stuffed for hours in a tube way too small, with your hands over your head, a needle shoved up your arm, and a voice telling you to “breathe”, “hold your breath” over the loud noise of jet engines.  So much fun, but it’s also ritual.  I walk into Radiology and the receptionist knows me, wanting to know when Dylan is coming home from college and how’s Hannah doing in her new school.  Nevermind showing i.d., I’ve been coming to see them for three years.  Sorry….waxing again.   It turned out I had five new tumors, four in my spine, and a nice big one in my sternum.  I had had tumors in my sternum when I was originally diagnosed with breast cancer and I knew how much of pain in the ass this new tumor would be.

I got my game face on and was ready to face the music.  I was ready for chemo hard and radiation trips every day forever.   Little did I know that I would have favorite music and comfy pillows while getting treated.  Huh, I know you’re scratching your head wondering what the hell I am talking about.  Let me get back to my story and I’ll explain everything.  My oncology doctor and my radiologist decided that I was a candidate to have a new form of treatment for the tumors.  I was going to have a new form of radiation called “Cyberknife”.  This new radiation treatment was developed by doctors at Stanford.  I’m sorry but you’ve got to love the Stanford medical community – sure the Mayo clinic is good, but those guys down south are on the cutting edge of using technology in treatment of cancer, heart disease, even Alzheimer disease.

Normally when you have radiation treatments, you get zapped for two to five minutes.  That’s the easy part.   It’s the fuss of driving to catch the ferry, praying your car will make it up the hills to the hospital (while S.F.’s hills are higher,  Seattle is way up in the clouds as well – and remember I drive a manual transmission); changing your clothes, locking up your stuff, waiting your turn in a ridiculous gown that even though you’ve tied the belt, if you’re not properly snapped at your shoulders the stupid gown is going to fall off of you.  And then of course, surprise you get to do it again.  An no, it’s not next month or even next week, it’s tomorrow.  Day after day, you get to experience the monotony of radiation along with the blisters that form inside your mouth, your skin beginning to blister, and learn that yes, you can throw up 60 times in one hour.  I mean, come on - how many times can you read the most current "People" magazine in the waiting rooms.

Cyberknife is large amounts of radiation to very specific area on your body.  It’s in a room that has 12 foot thick walls and door (and no, I am truly not kidding).  The room is in the bowels of the hospital and is huge, probably 5 times bigger than my living room.  In the room is the "Machine", I liken it to a humongous sewing machine, with a steroid pumped arm.  Remember,  normal radiation is spread over a region – i.e. – for my previous radiation treatments,  my entire sternum and everything around it, including my esophagus was radiated – hmmm, how I remember the green bile I keep throwing up due to the burning of my esophagus lining.   Cyberknife mixed with computer technology targets very specific spot.  They implanted three pieces of gold into my sternum surrounding the tumors.  The gold helps the machine to calibrate where to aim the radiation. Zap……do I get to get off the table and go home.  No, the machine moves one degree to the left.  Zap……the machine moves.  Lucky me, I’m on the table for near an hour and a half.  But this isn’t a “hold your breath” torture device.  You are on a comfy warm table with lots of cushions for your head, your feet……and yes….they give you nice and toasty warm blankets.  Plus, you can bring your iPod to play your music.  I remember on my first day, I gave them my music to play…….I told them that I had a sort of eclectic musical taste and that they probably wouldn’t like.  They immediately asked if it were country music as I could see them taking out their earplugs from lab coat pockets……No.  Some Lucinda Williams, Damien Rice,  etc.  Back the ear plugs went into their lab coat pockets.

While yes, I did have to come back the next day, and two addition days.  I had close to 6 hours of radiation in 4 days……should I have had the old fashion “breathe” torture device, I would have had to make the trip from the island, via ferry, to Seatle, up the hills to the hospital for approximately 90 days.  Yum……what fun.

So we’re doing the wait and see.  I am still suffering the effects of radiation poisoning – I understand I get to have that one for about a year or so.  So if you see me staring off in space and look unresponsive – no I’m not dead, just phasing out due to the radiation.  Yes, I still have to schlep over to Seattle to suffer the slings and arrow of my monthly dose of chemo, followed by two wonderful weeks of chemo sickness.  I had a CT/Pet scan in February.  The tumor on my sternum is receding, the tumors on my spine don’t appear to be growing, nor do they appear to be getting smaller.  It’s wait and see time – yet again.

But time is passing by, my flowers outside are beginning to smile with their vibrant colors, the gray is giving way to the sun, and I have had another year with my family.  .  They are going to have to take me kicking and screaming before I’ll leave them.   I love them so much…….so much so, that their laughter helps to ease some of the pain…..although Oxycodone is a great help for the spinal pain. 

Waiting for the Boyfriend to Call

Do you remember when you were single?  Go back into the memory files of your brain.  Think back to the time before you had a husband, a significant other, or even the steady boyfriend.  Think back before your husband would call just  to say he was on his way home and did he need to pick up your child from soccer practice.  Go way back in time, before you were comfortable with your special someone.  The person you could call twenty times as work to tell them about the crazy day you’re having and why won’t the principal call them instead of you when their daughter has taken a political stand and dyed their hair blue.  (And then calling them back and asking – why is blue so political)  Think back to the first meeting.  Wade through the foggy memories of being single.  Remember meeting that certain someone, the person you thought you might want to give your heart to or at least have a cup of coffee at Starbucks with.  You smile, they smile, you chat, they say something witty, your eyes twinkle with laughter, they nod their head with confidence.  The age old dance of getting to know each other is played out in a matter of minutes.  Numbers are exchanged and you go home to wait for this new person, this new potential boyfriend to call.

And then there’s the wait.  The first day goes by.  And you were sure they were going to call you sometime between 7 and 9 pm that first night.  You stuff file folders into your briefcase, telling your boss some made up story why you would work better at home tonight than staying late at the office.  You watch “Friends” (remember this is awhile ago – and “Friends” wasn’t a re-run yet) while trying hard not to look at the clock or the phone.  The second day comes and goes, and you begin to wonder if maybe you should call them.  The third day, you finally go to the laundry mat to do some wash otherwise you’ll be wearing your underwear for three days in a row.  You rush home, hoping the red button on your message machine is blinking. Nothing.  Day four and five, you begin to practice your “oh, I thought I’d ask whether or not your heard about blab blab” lines over and over, trying to be cool, upbeat, confident and not a stalker. You can do this, you can make that first call – only to chicken out and eat the last bit of Hagen Das Cookie Dough Ice Cream.  Day six comes, no phone call from them – but yes your mother calls and wants to know if you could have breakfast tomorrow morning  with her and Daddy as they’ll be in town (which everyone knows is the covert language of I’m going to check up on you and try to get you to move back home).  Day 7 rolls around, and they are beginning to be a distant memory to you.  You’ve got plans for next weekend with the girls involving dancing, drinking and dishing up the gossip.  The phone rings……life changes courses and you move forward.

So now if you’re asking yourself what does all of this have to do with the price of tea in China?  I’ll tell you.  I got to play go see the doctor this week.  Remember, I’ve got several new tumors to deal with and got to play pin the tail on the doctor this week.  My oncologist tells me I need to see my radiologist, which doesn’t bother me because he’s drop dead gorgeous and I never listen to what he says cause all I can think about is……oh my lord, why couldn’t I be about 10 years younger and 50 lbs lighter.  My radiologist refers me to a new radiologist who specializes in bone cancer.  (I don’t really like her as she comes in and starts with in a sing song voice – you know you are stage four and you’re going to keep having tumors until….that’s when she realizes she should have had a little bit better bedside manner as the hostility I fell is coming off me in waves).  She’s worried about my sternum and whether it can handle another bout of radiation.  So Ms. Bone Cancer Radiologist refers me to the Big Machine Radiologist.  Now…..just so you know…..this isn’t happening all in one day.   I’m schlepping over to Seattle via the ferry each time I see a new doctor.  $30 a trip, and over a $100 dollars gone is days,  I finally get to meet with the Big Machine Radiologist.  I like her immediately.  She doesn’t play games and lays the facts out clearly (and analytically – remember I was an accountant in a previous life) so that I can understand them.  My sternum can’t take the radiation – but Swedish has a new machine that will direct “a thousand points of light” at my tumors.  It’s shaped like a huge arm that moves around the patient.  She explains that instead of radiating my whole sternum (which is very bad as what’s going to protect my heart let alone hold up what’s left of my boobs) the machine targets just the tumor.   The machine was developed down in California at Stanford and she herself got to use it last year when she was diagnosed with breast cancer that had leached over into her sternum.  Lucky me……instead of 2 to 10 minute blasts of radiation to the general area over 20 days, I get to have 60 minutes of intense radiation on just my tumors over 5 days.  Woo-hoo, aren’t I lucky.

I know, I know…..what does this have to do with the boyfriend call.  I’m getting to it.  Ms Big Machine Doctor explains the procedure.  I will have surgery to implant 3 pieces of gold into my sternum (ouch).  Five days from the surgery, I’ll have another CT Scan to see how big the tumor is and they will use that coupled with my earlier scan to calculate the growth of the tumor.  Seven days after the surgery, I begin my 5 days of radiation therapy.   The Big Machine uses the gold implants to target the tumors.  And here’s where the boyfriend call comes in……   Ms. Big Machine Radiologist tells me, you get to go home and wait until the hospital can arrange a surgical room and get procedure approval from my insurance.    The hospital will call you very soon I’m sure.  Hmmm, what’s that……what happens if they don’t call?  I’m sure they will, however if you don’t hear from a week from today…..call me.

And so I sit…..waiting for the boyfriend to call.  The first day, I didn’t go anywhere in fear that I’d miss the call.  I’m up to day 4 and now have the irrational fear that my insurance won’t approve the new fangled treatment. Is it “Death Panels” that are holding me up.  Each day that goes by, my tumors get larger and larger.  And I wait for the phone call.  The call that will start the ball moving and hopefully will keep me alive for a little longer.

The Wait is Over

Yep, the wait is over – my cancer has returned.  Cancer, the Sequel.  Sorry, you’ll have to excuse me I don’t really have my game face in place yet.  It’s only now after a week and half that it’s beginning to hit me.  It’s back. It looks like you have more tumors, Joan.  Where,there, there, yes there….why, who knows, I don’t know…..third base (my daughter and I say that to each other whenever someone says I don’t know – it’s an Abbott and Costello routine)

For the past week I’ve been asking myself, how do I feel?  The answer so far is……I feel nothing.  No tears have leaked from my eyes, no panic fear has clutched my chest and interrupted my breath,  arms have been not yet been flung into pillows with anger.  I just move, go forward.  Get out of bed, get dressed, tie my shoes, hustle the girls off to school, do dishes, knit one, purl two.  Feed the dogs, the cats, the fish, the goats.  Wear socks because it feels cold.  Pull the covers over my head because I don’t want to think of what tomorrow will be.

I’m seriously good at rationalizations, though.  Well, I’d better cancel my hair appointment – since I might lose my hair again.   And damn, wouldn’t you know I finally have a cut and color that I’m happy with.  It will be okay…….we knew this was going to happen.   I have stage IV cancer, sooner or later it’s going to kill me.   Hey, don’t worry – it’s not like this is going to be the “kill shot”.   You know, I really did want to take some of this extra weight off before Christmas.  Looks like I’ll have no problem loosing it.

The fact is I do know what to expect.  I wish I really could stay in bed and make tomorrow never happen, but I can’t.  No change in chemo, just get to go through the whole regiment of radiation therapy again.  Oh joy.  I get to look forward to my skin turning lobster red and ooze with whitish pus, massive fatigue that will wear my body, my mind and my heart down and trample all over it, green bile from my mouth while diarrhea cramps the rest of me over in half.   Loneliness will plague me from the isolation of being with friends and family. 

A friend recently said, “it looks like you’re going to do anger this time, Joan”.  I’m not sure if she’s right or wrong……I just wish I’d feel something.

But hey……it will be okay (keep your fingers crossed)  I should be fine soon (in 6 months if I’m lucky)  We’ll manage (I seriously doubt)  I don’t need any help (Hahahahahaha……I guess it’s time to re-activate TeamJoan)

Gardening

Summer is finally here on Bainbridge Island.  It’s hot – around 80 degrees, clear blue skies, frogs croaking in the Alder tree infested woods, chipmunks chatting to each other from tree to tree.  Summer is iced sweet tea, melting popsicles, juicy seed spitting watermelon triangles.  Sun hats, sun screen, sun dresses, sun kisses in the form of freckles on your face.  Summer is also a time for gardening.

For the past three years, I haven’t really been able to garden.  The pain in my chest from having my muscles, underarm, and breast ripped from my chest has made it almost impossible for me to raise my hoe.  Tumors in my ribs, in my hips and sternum make it extremely hard for me to listen to loud rock music through earplugs as I walked back and forth mowing the dandelions and grass down on our lawn.  Poor Rainer has had to do everything – mowing, weeding, hoeing, planting, digging.  He’s been so overwhelmed – we moved from the Bay Area – where if you were lucky, you had a postage stamp for a garden.   To see tall trees you had to either head north to the redwoods to eww and ahhh or find the nearest park and be happy with the occasional non deciduous tree or two.  However thanks to wonderful friends, my church ladies have given me not only someone who helps to keep my house in order but someone to take the stress of the yard off Rainer’s shoulders.  While my wonder woman, Cecile, gives me laughter and a sparkling house, her friend Ruben mows the back forty and whacks down the tall weeds.  And because my dear friends have given me a gift I can never repay, they have also given me back my beautiful garden as Rainer is still weeding, hoeing, digging and planting - but more for pleasure than for the drudgery of always being behind on the massive weeds that were overtaking our house and septic system because the chief weed officer was out of commission.

I not only used to be a Vice President of Finance but I used to also be the Chief-Weed Officer of our little family company.  I used to love to weed.  I had very cool tools, a well sharpened red hoe to turn the soil and pave the way for seeding, the four finger claw that I used to hack not only the slugs but could break up the root systems of the dreaded Himalayan blackberries, a trowel that with one swoop dig down and get the deep roots of the pretentious dandelion.  Weeding was my source of relief from the ins and outs of working as an executive and playing the party politics games that one is forced to play when being the chief bread winner of the family.  Each time I raised my hoe, dug with my trowel, or raked through the soil with my trusty claw enabled me to put away the frustrations of work and helped me to still keep my chin up even in the chaos of working.  I enjoyed seeing the fruits of my labors – the year we grew corn – it was deeeelicious as my Nana would say, or when we built teepees and grew tomatoes, planting seven different colors of red nasturtiums and collecting their seeds in the fall for yet another year’s crop of little flowers.  But that pesky cancer has prevented me from doing what I love, however this year……I’ve been able to do very small tasks and those small tasks and Rainer’s back breaking hard work has given me my garden back.

This year I decided that if I couldn’t garden at least I could become the Director of Planting.  Poor Rainer, my bullheadedness is probably driving him crazy but he loves me unconditionally and has given me the beautiful, deep, rich colors of our garden back.  Since he was no longer playing catch up, he’s been able bring our garden slowly back to life.  It’s not as huge as it used to be…..and there are more perennials and self seeding plants as we used to have.  But he has given me little patches thriving greenery and smiling faces of flowers that I can see from my window when I sit in my rocking chair trying to take my mind off the pain in my bones.  And I have even taken of the role of weeding clerk.  I no longer can swing my hoe or claw, but I can sit crossed legged and with a little hand held device I can turn the earth and get rid of the pesky weeds and flower eating slugs.  I can only work on a small patch, usually no bigger than a square foot or so (for which I still pay the piper in the pain department – and usually take the next week to recover from).  And now when Rainer tackles a huge project of a new bed or a planting a hydrangea or two, I sit in my chair outside and play at being the Director of Planting.

I wish all my friends both near and far would come over to our little slice heaven and sit with me outside on a hot summer day, drinking lemonade, watching the hummingbirds sipping nectar from my many shades of red flowers.  I thank my church ladies for giving me back the ability to garden even if I never actually lift a hoe.

Revelations

No, this isn’t about God or anything like that.  It’s more about memories.  The other day it was blistering hot, about 75 degrees.  (Now many of you who are sweltering in 100+ weather may think that 75 degrees is a welcome respite – but here up in the Pacific Northwest – a sunny day over the temperature of 60 degrees is hot……75 degrees and we’re passing out on the sidewalks).  I had made a deal with my girls – two chores – and then a trip to Battle Point Park and its wonderful playground.

It took awhile for my girls to do their chores.  Not because the chores were herculean tasks, but because my girls are typical children.  Mom, do I have to.  Why does Emma always get the easy job?  Hannah, if you want to scrub toilets you are more than welcomed to.  Mom, I finished my chore – can we go now.  Did you do X, did you do Y……I did X; I’ll do Y when we get back. No, you’ll do it before.  Okay…..two hours later. Can we go now, did you do Y.  Not yet.  Hmmmm, maybe you should do it now.  Ten minutes later, a girl comes rushing upstairs…..Mom, Mom, Mom, where are you.  Oh there you are – naturally, I’m on the toilet – God forbid I am able to use the bathroom without an interruption.  I’m done.  Can we go now?  As soon as I am finished here, we can go.  Yippee!!! My eight year old exclaims.   And then those faithful words come out of her mouth, hurry up Mom – it’s time to go.

We piled into our car, windows rolled all the way down, rooftop open, tunes on the radio.  Their brother opted to stay home – quiet time for him.  I brought bottles of water, knowing that sooner or later my girls would be begging for drinks.  I got lost while driving over to the park; I turned when I should have gone straight.    The girls were in the back seat chanting their mantra, are we there yet.  Oh well, my zig zag  was an adventure – and I must say those mansions on the southwest of the island are pretty spectacular.

Finally we made it to the park, the girls practically jumping out of the car before I had even parked it.  My girls were off as I scrambled to get my cane, the bottled water, my knitting (hey, I get pretty bored while they’re off frolicking on the monkey bars), and my hat.  I found a place in the shade and began knitting while they we off at a hare’s pace up the play structure to cross the rope bridge. 

I knitted and watched them.  The sun was beating down.  I had ceased to exist for them as my girls were in playground nirvana.  Swings, rope bridges, hot steaming metal slides, and bars to practice being Tarzan as they swung from bar to bar. 

My mind was wandering from the playground and off to the left I started watching teenagers on the tennis courts.  Knit one row.  I noticed two teenage boys were getting lessons from a tennis pro.  Purl one row.  It was obvious who the pro was and who wasn’t.  Knit one row. The pro was slamming balls at the boys like some gangster shooting his Tommy gun. Purl one row, pull out more yarn.  As I watched them, my mind drifted back to my early twenties. Knit one row.  I used to play tennis.  I was terrible at the game in high school.  I was rather gangly and my legs were about as coordinated as a new born fowl trying to take its first steps.  However, in my early twenties – when I was just a mere accounting clerk – I developed poise.  I remembered how I used to play a mean game of tennis with a fellow accounting clerk on my lunch hour.  I had a wicked serve and a seriously mean backhand. Purl one row.  As the instructor lobbed the ball up for a serve, I thought back to my own serve, throwing the ball up and crushing it down with my right arm. Knit one row. Immediately I was ready for the return service from my friend.  Purl one row.  My mind was drifting, I was the one playing tennis, I was the one running around the court ready to slam the ball back to my opponent.  I was the one sweating in the heat, laughing with my friend, running, jumping, making silly lobs, Knit one row....  Mom, I’m thirsty.

I was back in the real world, pulling cool water bottles from my purse, being the mom and my children were calling out – look at me mom, look what I can do.  I realized I will never be able to lob that ball up in the air.  The pain in my chest, the lack of muscles that were taken out during the mastectomy, the living with stage IV cancer will never allow me to run and play.  And so, I looked away from the tennis courts and smiled at my children as they bounded from slides to swings to hanging upside down like monkeys on that playground bars.    

ticking

I was chatting with some good friends the other day. We were discussing life, the usual way that friends discuss life. How was your spring holiday? The weather was warm in California. Did you hear that blab; blab was playing at the Pavilion. Gosh, I’m hungry…..here, have a bite of my scone. Do you think the skies will ever change from gray to blue again? When a friend turned to me as said that proverbial phrase I hear so often……. How are you doing, Joan…..really.


Normally, I make some flip remark, I’m medium, oh I had a hard night last night but I’m okay today. Or I just turn the edges of my lips up in a soft smile and say…..I’m hanging in there. But, I’d had caffeine and just hanging in there wasn’t working for me on that particular day. I wanted laughs, so I told them about my recent tests……and my new prognosis. (I’m sure you’re all waiting with bated breathes). So I guess I’ll not only update my friends, but the world out there who might read this.

In 2008, I was given 18 months to live. In 2010, I was given 18 months to live. Now nearly three years later and numerous claustrophobic PET/CT Scans, MRI’s with blue barium, sharp, pokey, needle drawn blood tests, tight mask head exams, etc. I now have been given 24 months to live. Now you have to admit, my prognosis is hilarious. If I’m lucky, I’ll live until I’m 90 and then still be given another 12 months to live.

The thing is that I am ticking down. I use a cane now to walk. I find that by the afternoon if I didn’t have my tiny white pills of Percocet with ibuprofen on the side, I would curl up into the fetal position on my bed because my ribcage hurts from the bone cancer. Although I loathe doing housecleaning and used to have the ability to write a check with the best of them for a housekeeper, I now would kill to be able to get down on my knees and scrub my wooden floors as the grim keeps building up on them day after day. I am slow and no longer at the top of my game.

But we’re all just ticking down……some of us just at a little faster pace.

Sadness for an inspiration

I was very sad to hear that Elizabeth Edwards is nearing the end of her journey. She has been an inspiration to me, and helped me to keep going. I know, I know……I can hear you thinking to yourself. Why her, why not some other famous person with cancer. It’s because Mrs. Edwards was diagnosed with the exact type of cancer I have, she’s just four years ahead of me.


In the past I used to think…..OMG, I’m dying of cancer. My heart would pound, my brain would race, the anxiety I felt would stop me dead in my tracks. However Mrs. Edwards would just go on, her mantra became my mantra. Instead of dying of cancer, I would say…..OMG, I’m living with cancer. Not much changed, my brain still races, the anxiety still at times stops me, but my heart stopped beating so loud and I could turn around to notice my children’s smiles, the sun shining on my face, the music of laughter with my friends and the joy of seeing another season pass.

My heart goes out to Mrs. Edwards’s family and I think of her young children. Is this what my children will experience in the future? And when will the cancer cells in my body say that my journey is at an end?

Why?

Emma is in her room, playing with her Webkinz animals. Hannah’s downstairs doing the dishes, singing songs at the top of her lungs. Rainer’s playing sad music in the room below me. And I sit here softly crying, wondering why.


Why did I get cancer, why did it spread to my bones, why do I hurt so badly? Why can’t I vacuum the floor anymore, why can’t I get out of the bathtub without help? Why do we have to have money? Why does my heater break down every two years? Why must it get cold in November? Why does the refrigerator no more automatically defrost? Why must I use a cane? Why is the water guy going to turn off our water in 10 days? Why does money have to be important? Why can’t people just get along? Why am I so selfish? Why are my toes and finger numb? Why can I no longer work? Why does God no longer answer my prayers? Why must I sit listless in this chair? Why am I getting older in my children’s eyes? Why does is rain? Why can’t I fly to Tahiti and surprise my best friend? Why are my bones crumbling? Why is it so gray? Why do the tears roll down my cheeks spotting my sweater?

The more I look for answers the more questions there seem to be. And I keep moving, trying to dodge the fates that are continued to throw at me.



I can smell the lasagna wafting its flavor up the staircase to where I sit. I hear dogs running up and down the stairs. I feel so old. I am so tired. But they call up to me, Mom dinner’s ready. I answer back; I’ll be down in a sec. I am going to go wash up my face and pretend some more.

Why is this life so hard?