Tired Warrior

Have you ever wondered what it would feel like to be in the ring with Mohammad Ali?  I mean the young Ali of course.  The obvious would be that I’d get my butt kicked from here to Tallahassee.  Well, after experiencing the first symptoms of illness that started in December 2012 with itching, and jaundice, being diagnosed with pancreatic cancer, then having a stint inserted in my pancreas, a port in my chest, being diagnosed with breast cancer less than a month later, 6 months of chemo, a couple of infections; one in my fingers and one in the chest, having major, major surgery to remove the tumor and part of my pancreas with my plumbing rerouted (receiving confirmation after surgery that the cancer had not spread – yea hope!), then numerous CT scans, about 3 biopsies, 2 Endoscopic Ultrasounds, mammograms, M.R.I.’s and Ex-rays and now...SONOFABITCH!  Now I know. I feel completely pulverized, my body beat down both physically and mentally!   Seriously, for the benefit of my two friends, who were kind enough to go to my doctor's appointment with me on Friday to get the biopsy news, I did smile when we left the doctor’s office because they looked as shell shocked as I felt, and I wanted them to feel better.  But when I lifted myself up from the chair it took every single thing in me man, because I felt so heavy.  I literally had to heave myself up as if from the floor after a T.K.O.  Sorry Ali, but you are the only boxer figure I could easily recall. This was my state of being after learning Friday the cancer had spread to my liver.  I am now a Stage 4 pancreatic cancer patient.

Okay, so now with that out of the way, here’s what’s going to happen.  This Thursday I start some aggressive chemo to get rid of the spots in my liver AND hopefully to prevent the recurrence of cancer in my pancreas – bye-bye my cute kinda sorta Hallie Berry do.  Bye-bye finger nails and toe nails – here we go again.  I detest chemo, but I know that’s not news to anyone who’s had to go through it.  I’ve only met one person who actually said it was a time where she'd never felt better.  Oh-kay!  But this friend of mine is very unique and one of a kind, and I mean that in the sweetest of ways.  What I need to do is decide – and I’m not allowing a whole heck of a lot of time to go about it – how I'm going to handle this new development. I've been known to walk around with a scowl and my bottom lip sweeping the floor, but honestly, that's not a good look for me.  I can't control a lot about what's happening to my body, other than exercising and nutrition, of the food variety and the spiritual, but how I live my life and how I respond to everything that happens to me from this point on is within my control! 

Now this Saturday I could have locked myself in my room and hid under my covers like I do when I’m moping, or thrown myself dramatically to the floor with my legs and arms flailing while screaming obscenities at the top of my lungs, in a grown-up full blown hissy fit, but I did neither.  Well, not where there were any witnesses anyway.  I actually – yes I did -- attended a masquerade ball for breast cancer.  My sister, who belongs to the Styles of Steppin’ dance organization, signed up for the decorations and to donate some gourmet baskets to the highest bidder.  I promised I would attend and out of fear of my big sister kicking my ass for reneging, I put on some war paint, dressed up all fancy and threw on a pretty mask.  Immediately I felt like something exotic and mysterious.  Yes.  Not the Angie dealing with cancer, but Angelique, the woman in the red mask.  It was so much fun! 

 The mysterious Angelique

Listen, one of my most favorite movies of all times is The Shawshank Redemption.  There was a really poignant scene between Red and Andy Dufresne, the guy who was framed for killing his wife and her lover.  Andy said, “Get busy living or get busy dying.....there ain't nothing in-between.”  That resonated with me then, and even more so now.  You see, there really shouldn't be anything in-between unless I'm just existing -- like one of the undead, and that's not good living to me.  "Get busy living or get busy dying."  There it is.    

Hey, even this warrior gets tired though, and irritable, and bitchy -- and I do and will, a lot, 'cause living with cancer kicks my ass on some days, but then I have to get back to it -- 'cause when I get my call, and go sliding into home base with all the skid marks on my body from this surgery or that one, like badges of honor from living life in lieu of just walking through it, the heavens will know that I had a damn good time on life's play field.  But before my story gets to the finale, I gotta get up and kick some more cancer butt.  That's how we do it!

 

My niece, me and my big sis 

 

To all warriors everywhere, keep living strong my friends!

 

Dear Kenny

I miss you.  So much.  The last few days I’ve actually run your cell number through my mind over and over just to make sure I can still remember it, and I can.  It's still logged in my memory bank.  On some days, my fingers itch to dial each number onto my key pad to listen to the ring, a ring that used to be followed by your deep timbered voice, “Uh…Hello”.  I swear it always sounded like you were saying yellow instead of hello.  I don’t dial the number anymore though as I don’t want to creep out the new owners.

You went through so much Kenny. I wish I’d understood all that you were going through at the time. Still, I hope I was of some comfort to you when I visited.  I understand so much more now. You were always so private, never wanting to worry anyone, especially mom and dad.  When I have a problem I want to put a blow horn to my lips and give a shout out to the universe of all my business.  You never complained.  I always complain.  You were selfless.  I am selfish.  We could both be reclusive especially during difficult times, although we had our social moments -- me, more than you.  You were so kind and giving.  I’m…well, just ornery on most days with sporadic moments of kindness.  You listened to me.  I listen to myself talk…a lot.  Shoot, we were as different as we were alike.  But seriously Kenny…I listened to you, I heard you — and it was just so painful that I put everything into not crying in front of you, and so I put on my stone face so you wouldn't know.  You wanted to talk about the fact that you were dying.  I needed to believe it wasn’t possible for you to not be in my world.  The thought of losing you was ridiculous and unbearable, but I should have let you talk instead of doing that lip-poke going-mute thing I know I did when emotionally challenged.   I'm so sorry.  Then you weren’t here anymore.  The unthinkable happened, you died. And my heart shattered.  It did.  It is still difficult to comprehend after – what?-- five years? – Geez. No more visits to Shari's for coconut cream pie.  I miss that.  No more visits from you so I can make 1-2 & sometimes 3 German Chocolate cakes during your visits.  First couple of years after I still made them in your memory.  We definitely shared a love of desserts.  A legacy from Dad I think.  And you know what?  I can't help but feel that it should have been me instead of you with pancreatic cancer then.  And now it is me.  So weird.  I wish you could be here to enjoy silly times with your kids and all your new grand kids.  Kenny, your family has grown with the addition of beautiful babies.  I know you are smiling right now with pride. Sigh.  I know God has reasons for what He does, but I just wish He could have given a hint or two of the whys behind the reasons.

I was thinking about something that made me smile on the bus ride back from Seattle today.  Do you remember the time when you were about 12-years old, you and Jimmy were playing cops and robbers?  As you were obviously the bad guy, he handcuffed you to the electric fence.  OOowe! We were so glad that fence was off or you would have been toast -- your lucky day!  The police had to call mom at work to tell her that her son was handcuffed to an electric fence, and nobody knew where the keys were.  Oh she was terrified at first…then furious as all get out. I can imagine she said something like, "What the hell?!" As your older sister, I have to say…well done.  That was frickin’ hilarious! LOL.

Now here is what I really wanted to talk to you about.  My biopsy didn’t go so well today.  Yep.  Cancer is in my liver.  Apparently, it spread from the pancreas.  Dr. Picozzi looked so sad I felt bad for him.  He said, “It’s very difficult for me to have to tell you this because you've been doing so well, but we found cancer in the liver.”  I think his bottom lip trembled a bit.  He’s such a kind man, all I wanted was for him to not feel bad about it.  I said, “Dr. Picozzi, first let me say that I’m glad I’m in your care.  I feel like I’m getting the best treatment."  Then I told him that I'd scheduled a trip to Mexico on March 2014, and wanted him to focus on fixing me up in order to make sure that trip happens.  He smiled, a big smile of relief I think.  “Well”, he said, “I hope you have a wonderful time in Mexico.”  I nodded, pleased, and released a sigh of relief because that’s exactly what I was hoping he’d say.  Now we both know we have a lot of work and healing to do before that day comes. 

More aggressive chemo starts next Thursday.  They will be using a cocktail of drugs like: Fluorouracil by injection, OXaliplatin and Irinotecan which are administered through infusion and Leucovorin which is taken orally by mouth. Radiation is no longer an option for me as cancer could be all through the liver which makes radiation therapy ineffective. Quite a toxic cocktail for one!  The breast cancer is once again put on the back burner.  Holy Moley! 

But regardless of all this, I’m getting on a plane -- bald headed all over again I imagine -- next March to Mexico come hell or high water.  You know how stubborn I can be.  We are like twins in that respect. 

Well, I guess I've said all that needs to be said.  Oh one more thing though, you once told me you weren't scared of dying, but that you were more scared of leaving your children.  That's a hero's response right there Kenny.  I know you've always told your kids you were batman, but I actually believe in you Mr. Superhero. You'll always be one in their hearts, and mine for sure. But I need to be honest, I am scared.  All the time.  I'm scared for my children.  I'm scared for our sisters and brothers -- especially Jimmy -- who will check in on him from time to time?  I worry about Debbie, as you knew I would.  And yes, I worry about dying -- more on the details then anything else, like how much will it hurt.  People say I’m courageous, but I feel like a fraud because at nights I’m a scared little girl crying herself to sleep.  People say I inspire them but how can that be with all this fear weighing on my back.  I am no superhero but I will try harder.  I promise. What do you say? 

Be strong, for your kids.  And just keep doing what you need to be doing.  It’ll be okay.  You'll be okay Big sis!

Yeah, I can hear you saying just that.  Love you Kenny!

 

Angie

Circle of Love

So I’ve been lamenting (my fancy word for whining) these last few days on some bad stuff and thought I’d share some better moments, because to be honest, I’m getting sick of my own self imposed tragedy by sulking.  Yesterday was really medicinal for me.  Early morning I had some blood work done and that doesn’t count as medicinal by any means as far as I’m concerned, but then I stopped by my office to see my crew.  Every time I visit the office my colleagues pull away from their busy desks and give me rock star treatment and it is like medicine to me.  If I’m feeling ‘oh woe is me’ when I get there, I for damn sure don’t feel like that when I leave.  This group of angels deemed my 'circle of love' makes me feel like I am somebody special, and on some days, everybody needs to feel like that. 

Below is a picture of me and the gals in my own department.  I’ve been with my company for 20 plus years and have worked with these amazing ladies for the last 6.  As colleagues and as friends, they rock!  I have been on leave since being diagnosed and really miss interacting with them during the workweek, so of course, any time we can get together we have to disappear for a long lunch and some quality bonding.  Well, yesterday was as good a day as any. We went to the Lone Provincial in downtown Seattle, and chatted about a whole bunch of stuff while grazing on some grilled noodles and seafood and other yummy stuff I can't remember the name of.  We laughed loud and talked loud like we always do when in each other’s company.  During the six months prior to my surgery on Chemo Mondays my ‘circle of love’ never gave me a moments peace, and I mean that in the most complimentary of ways.  There was always somebody from my office sitting in a chair close by me to do the proverbial handholding.  And my gals pictured below, and other members of the 'circle of love', would bring me amusing anecdotes on office gossip, which is a naughty indulgence of mine, some hot cocoa from Dilettante Mocha Cafe - another naughty indulgence -- and lunch or snacks or handmade blankets or knitted shawls to keep me warm.  Sometimes all of them would be in my room at once and I'd be catching z's from the cocktail of pills the nurse had given me before starting my chemo, and the ladies would just chat around me while I snoozed.

I think my biggest fear since being diagnosed with cancer is that I will fade away, and be forgotten...or become an afterthought...after work, or play or everything else, because it is a fact that life moves forward.  Disease slowed my butt down to a crawl.  No lie.  And sometimes it's just hard for me to keep up with everybody as they proceed with business as usual, because nothing is usual for me anymore.  It is what it is.  But my ‘circle of love’ will not let me fall behind.  They are holding on to me as tightly as I am holding on to them, and they just keep pulling me along with them.  For that, I am eternally grateful. 

I wish for all of you going through this thing called cancer or any debilitating illness, to have a 'circle of love'.  My family and friends bring light to my dark days and at times they can make everything that feels wrong right again. For anyone who does not have a 'circle of love', and even if you do, I would be honored if you would consider me in your circle, and just maybe we can get through this thing together.

Ciao baby!


 “you never know how strong you are... until being strong is the only choice you have.”
― Cayla Mills

Another Liver Biopsy

I talked to my doctor last night and apparently it has been decided the next course of action is another biopsy, so next Monday is my day for that.  It took everything in me to ask this question, "If cancer is found would it just be a matter of a little more chemo?"  Will I be terminal? I did not ask aloud.  He said, "If there is cancer in your liver that will involve an entirely different discussion so let's just focus on that not being the case."  I should have asked him to elaborate, but I didn't.  I am a coward. 

Today is a peaceful day of sorts. My mood is seriously laid back, the glass of Roscato sweet red wine helped -- okay two glasses.  I laid around, got up to eat, made bathroom stops, ate some more, watched a couple of episodes of the Charmed series, then ate some more.  I do lazy really well.  I like to turn a positive spin on it by calling it meditation: a search for that Zen state of being; self-examination and trying to look beyond what is happening to me to learn how to deal better.  Cancer does things to you; makes you complacent on some days, obsessively reflective about the future -- do I have one? -- and really, really scared.  Then there are the days when I feel like 'I've got this!' but then in-coming calls with the results from this test or that one where cancer has turned left when it should have turned right blindside me, and I find myself looking smack-dab into the unknown, again.  I am always scared these days,  I just need someone, anyone, to tell me with conviction that everything is going to be alright in the end, that I will have the happy ending in the sentimental Lifetime movies I like so much.  But I know, I do know -- only time can give me definitive comfort like that.

I went on the Internet which is probably the worse thing to do for answers when fear is creeping up your spine, but I felt compelled.  I was looking for another me, someone who was dealing with or who had successfully dealt with having more than one cancer.  I didn't exactly find what I was looking for, but I found an article on patients with multiple cancers.  Before getting half way through the daunting statistics on survival rates and all the other blah, blah, blah...my eyes glazed over, I felt chilled to the bone, so I shut it down.  If the biopsy is not good this time, then the cancer could have spread or I may have a third cancer in my body.  How on earth will I survive three different cancers in my one body?  Whomever termed cancer a journey was not even lying because this stuff is a trip and seriously...I'm wishing I could just make it all the way to the appointed destination with no wrong turns or bad stops in-between.  I know. I know.  I know.  More positive thinking! 

I'm being selfish right now with all my weeping and wailing.  I hate this kind of mood, it feels like something soiled and rotten, a defeatist state of being that doesn't do a bit of good but make me feel bad.  It is what it is.  I know there are people out there dealing with worst, and that makes my heart sore and reels me back in a bit.  Tomorrow will be better.  

Here's something I'd like to share, I've been given a carrot to focus on for the near future, a trip to Merida, Mexico in March 2014 -- 7 days at a luxury resort sitting poolside or napping in a hammock with a beer in one hand and a Margarita in the other.  A place for healing, a place for reflection, a place for bottomless Margaritas and frijol con puerco. God willing, I will be having my happy ending and leave this paradise feeling absolutely satisfecho!

For all of you out there, especially those of you who feel what I feel because you are where I am at, my heart is connected to yours in a truly visceral way, and I hope you allow this connection to bring you comfort on those damn dark days.  Knowing you are out there sending me good vibes; praying for me, listening to me, caring about me -- comforts my heart and my soul, and I am sending it all back to you a hundred times over. 


“If there is no struggle, there is no progress. Those who profess to favor freedom, and yet depreciate agitation, are men who want crops without plowing up the ground. They want rain without thunder and lightning. They want the ocean without the awful roar of its many waters. This struggle may be a moral one; or it may be a physical one; or it may be both moral and physical; but it must be a struggle.”
― Frederick Douglass

W.T.F.

As I drove home from St. Joseph Hospital in Tacoma yesterday my thoughts were crowding me.  I had a hard time putting crap into perspective, rationalizing some new realities and all the other bullshit having to do with cancer.  July 15th I had a successful surgery to remove the tumor in my pancreas, they got all the cancer, then oh no! spots on your liver that -- yea! -- turn out to be an infection so just take a bunch of antibiotics and we're golden.  Then...oopsies...looks like we may have biopsied the wrong spot -- could be cancer after all.  What!?  You see, Dr. Picozzi, my oncologist, called me at round 7:00 p.m. with the results from Monday's CT scan, while I was sitting bedside chatting with my sister.  Ergo, my really pissy mood right now.  But you know what?  Let me get back to that. I want to focus on some good things about this past week. 

The last couple of days have been so cathartic for me.  A handsome long-time friend from eastern Washington paid me a visit.  Although he and I connect daily by cell, I hadn’t seen him since February.  He swept me off my feet for a few days distraction, we spent an evening listening to a little Al Green (sang:  I’m so in love with you…); we laughed a lot, partook of some libation (yes I did!), and danced – showing off some funky moves from the good ole days, and we did a lot of reminiscing.  He took me to breakfast at Elmers, one of my favorite breakfast spots and I ordered my usual, classic and creamy Eggs Benedict – yum-mie.  We went to see “Runner Runner” with Ben Affleck and Justin Timberlake – I love to see movies with Ben trying to be bad.  The movie was riveting and I couldn’t take my eyes off the screen, and all the while my hand was dipping into a bag of some overly buttered popcorn to deliver the goods to my mouth.  Is there even such a thing as too much butter on popcorn? (so good).  Two days of good company and conversation and not thinking about the “Big C” was medicine to my weathered body and soul.  

So about my sister, my dear beloved sister who opened her home to me after I was diagnosed with cancer, has been everything you want a big sis to be, a frickin' Rock of Gibraltar.  Now she’s needing a return on that T.L.C.  She suffered a stroke a couple of months ago, and was finally just approved by the insurance company to move forward with a procedure to heal up the culprit behind the stroke, a hole in her heart.  The procedure was done yesterday and lasted little over an hour; it couldn’t have gone better (thank you God!).  She had some minor bleeding so they kept her overnight for observation.  My sister is a badass, a powerhouse in a petite frame, and I know she’s going to be just fine. But until she's better, I will be her rock.

Okay, so let's get to the matter at hand. I was told earlier by Dr. Picozzi’s nurse he would be calling me between 6:00 and 7:00 p.m.  I thought that was odd because they usually call you into the office to hear news on test results so they can charge you the $40 co-pay.  So at around 7:00 p.m. my phone rings.  There went my heart a pounding.  “You have an unusual situation going on.  There is now one additional spot on your liver.”  O-kay. I felt my tightly held nerves start to crumble.  He said, “I’ve had a couple of specialist look over your test and one feels that perhaps it is cancer and we didn’t take the specimen from the right spot during the biopsy.” Shit, shit!  “The other opinion is that we got the right spot but that there may have been bleeding in that area which caused the new spot."  Please, I prayed, let it be option 2.  I held my words as he continued.  “We are trying to decide if we should ignore it for now and continue on with further radiation/chemo treatment or if we should do another biopsy of the area.”  Since being diagnosed with cancer it feels like I’m always holding my breath waiting for the other shoe to drop, and lately they just keep dropping.  So now, my doctor is waiting for an opinion from one other colleague and will get back to me either today or Saturday to tell me our next move.  I said okay.  Even though there were probably a hundred questions I should have asked, I just said okay. 

Fear and the weight of it all are literally and figuratively breaking my back.  On some days, it takes everything just to move forward, to keep my spirit from becoming a casualty. This is one of those days, and I just can not let this break me. But oh my this space I'm in right now is closing in on me.    Dammit! Dammit! Dammit!

 

 

 

"Oh, my friend, it's not what they take away from you that counts.  It's what you do with what you have left."  ~Hubert Humphrey

 

 

T. M. I. Beware

For several months I've tried really hard not to think of breast cancer, because of my current situation, which has been on hold.  But can you really put cancer on hold?  I'm too afraid to pose this question to my doctor.  With breast cancer month upon us it's getting really difficult for me not to think about it. I was diagnosed with breast cancer last January, and at the time, my tumor was less than the size of a zit.  Has it changed? Will I have to have a mastectomy or lumpectomy?  I've warded off worry these last few months because I've been otherwise detained...but now...  How much can one body take I wonder?  I will most definitely be having a mammogram after this next line of chemo/radiation therapy to see what's what.  Oh my.  I'm praying, hoping, and pleading that it has not worsened. Yeah.

Speaking of breasts, I have a non threatening issue that warrants discussion for anyone going through the same thing.  After having the Whipple procedure I was left with a long incision down the center of my torso, which has become a keloidal scar.  If you will recall from earlier posts, it didn't immediately heal at the top and my doctor had to reopen it and pack it with moist gauze.  I personally spent about a month and half packing it with gauze before I could finally let it close naturally.  Thank goodness that's over now.  But the entire area is so hypersensitive I can't stand to have anything against my skin...no clothing, no bra...nada, this includes my ample bosoms which sometimes swing against the area in question if they are not adequately bound, because...honestly?...gravity and I have not become close friends over the years.  It's not painful, just uncomfortable. Of course going without a bra is not an option during the day, and going without clothing in public is against the law and just...not cool.  Taping a square piece of gauze over the area like I did when the wound was healing helps but there's still some discomfort and the tape agitates my skin.  I've even gone as far as taping a maxi pad over the incision because the soft padding is comfortable and offers protection against fabrics and the underwire of my bra...although it's too bulky for daytime, works perfectly under my bed clothes. God forbid I have a run in with some paramedics and completely baffle them as they try to figure out how a maxi pad ended up on my chest.  I've been told the overly sensitive skin problem will be an issue for about a year and lessen with time.  Come on. I also have concerns that radiation, which will be targeted for this particular area, will cause the keloid to burn and blister. Ouch! So many things to think about.  I'm currently researching various salves and ointments for this area and will advise what works best for radiation treatment.  Right now I'm leaning toward Lindi Skin Care, a product I found on line when I was going through chemo that just might do the trick. http://www.lindiskin.com/.

I have good news! Today is my last day on antibiotics and I'm just waiting for the hospital to call to schedule my next CT scan.  Ah man...I hope the infection has cleared.  Life these days is just not boring.

Have a great weekend! Ciao baby!! 



“If you aren't in over your head, how do you know how tall you are?”
― T.S. Eliot