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.