You're Fired.

I had my hair colored yesterday with the woman who’s been doing my color for 2 years.  She’s a color genius. Amazing, calm, not too chatty.  She was a nurse in Peru before coming to the US.  She has a soft touch.  I would’ve liked her as my nurse…well she is sort of my hair-nurse.  Another person does my cut at the salon.  Trained in France, he is well known, an artist.  He’s highly skilled, precise, careful.  He knows hair.  They are my team.  Finding a stylist and colorist who are not only skilled, but trusted is an accomplishment—it’s sort of like winning the lottery.  Ask most women, hair is an intimate experience.

OK, so what does this have to do with cancer you ask?  I’ll tell you, it’s about having the right team.  Not only a qualified, skilled, talented, reputable team, but a team you trust.  A team that has the right touch.  A team that cares about you and your diagnosis.  I didn’t understand at the beginning of my diagnosis I would need a ten-year relationship with my doctors (surgeon, radiologist, oncologist, OB/GYN).  I have a hard time keeping straight who I’m supposed to see and when.

First my surgeon.  She is the dream doctor.  Qualifications, all a check.  She is professional, but that’s not why she’s my doctor---it’s who she is as a person that makes her my choice.  She is direct, yet kind.  She is efficient, yet spends time with me.  At one appointment, she even tolerated a list of questions I brought with me from my husband.  I’ve brought both of my sisters to appointments and again, she didn’t look as me as some big baby, she saw a scared woman who needed support.  OK, Dr. M even texts!  Yes, complete with emoticons.  She is my gal.

On to my radiologist.  Again, top dog here in the quals—it’s who he is that had my vote right off the bat.  He gave a first name introduction at my initial meeting (his whole name sounds like some Vegas performer, I love it!  Saying his name makes me smile).  He’s a kick.  Young, hip.  Smart as crap and funny.  In his dictated notes at the first appointment, he kept referring to me as “a pleasant, 51 one year old woman!”  He said it three times!  I teased him about it and he said there are plenty of people who aren’t pleasant, so I’ll take the complement.

Now on to “you’re fired!” My first oncologist, has the professional reputation and was recommended, but she was dry as toast.  Dismissive almost.  And yet I stayed, until I didn’t.  What put me over the edge was how she handled the tumor testing and the final decision on chemo.  The test was supposed to take two weeks.  I called the office several times to follow up…here was the response “maybe it’s on the fax machine.”  Really?  Really?  I’m waiting to see if I’m going to have to be sick as a dog, lose my hair and that was the response?  Finally she called me a week later (5 minutes after I pleaded with Dr. M’s office to help) and she gave me the results.  I had to ask, so this means no chemo?  She said right, how does that sound?  I wanted to jump through the phone and well, you know what I wanted to do!  But I composed myself because I was checking out at Target of all places when I got the call (you take a cancer call no matter where you are).  So I thanked her, hung up and proceeded to tell my Target cashier the following….yes, I really did this…

“You don’t know me, but I have cancer and I just found out I don’t have to have chemo.”  He was lovely.  He congratulated me and told me that was wonderful news.  Yes, I was celebrating “no chemo” at Target with my cashier because cancer makes you do things you might not have done in your life, like celebrate each moment, take each piece of good news that you get and savor it like a little piece of candy.  ** Note to self, I should probably let Target know that one of their employees was sensitive, kind and went above and beyond. 

So I fired the oncologist. My new one is interested in me, curious, wants to know anything and everything about my health and other doctor’s appointments—cancer related or not.  She’s feisty, a bit bossy….I like her just fine.

Who’s on your team?

DAMNED IF YOU DO, DAMNED IF YOU DON’T

Tamoxifen—let’s just say it, it’s a trip.  Before I was put on the drug last year, my husband and I asked the oncologist, the surgeon and the radiologist, “What about the side effects?  How does it impact mood?  I wish I had recorded the reactions!  First the faces, then the sounds.  A lot of “ooooooooooohhhh”, “welllllllllllll”, and “hmmmmmm.”  Hilarious.  The tone and expressions said it all--- not good.  The oncologist did say that it’s hard to parse out what’s Tamoxifen and what’s menopause.  Oh joy!  A double whammy! Even with their reactions, it seemed a clear choice to go on the drug, so on it I went.

 Let’s talk about the night sweats first.  OK not pleasant.  I’ve figured out that they normally get triggered after my middle of the night bathroom run, so I’ve started bringing a cold washcloth back to bed.  Seriously it helps.  Sometimes I need two.  When I’m done, I just hang it over the headboard until I need it again!  Problem solved.  Now the blanket situation is a bit trickier.  I am normally cold blooded; I like to sleep in sweatshirts and under three down comforters.  Do you see where I’m going?   This presents a dilemma when you are suddenly drenched and need to escape everything quickly---oh and without waking up the sleeping husband (Thank God we have a King—but is there anything bigger?)  So I’ve come up with another solution, first I’ve taken all of Gordon’s old T-shirts and cut the necks out (very attractive ladies) and that’s my go to PJ’s. They are big and roomy and absorbent. I put a sweatshirt on when I go to bed, but take it off on the washcloth-nightly bathroom run.  Is this sounding too complicated?  Honestly, this crazy process working!  When I slip back in to bed, I don’t put the covers on and just wait being washed in sweat.  By the way, does any one else mostly just get it on their chest? Ew. It’s gross.   I think the Tamoxifen has given me more vivid dreams too.  I kick Gordon a lot in my sleep and he has to wake up from some dreams because I’m whimpering.  Again, very sexy!  My sleep sucks and so does his!

So back to moods, save the best for the last right?  Gordon should probably have his own blog on this topic—actually that is a very bad idea!  As for my mood on Tamoxifen, unless it’s a bad day, I really don’t notice.  One of my friends said something very funny t about her five years on it….she said, “I was always a bitch, so I don’t really think it affected me!”  I almost choked I laughed so hard.  I’ve reframed Tamoxifen through the help of another friend and survivor; Jane called it her “warrior drug.”  I like it.  Strong, fighting, tough.  Good one Jane.

 So there it is.  Life with cancer.  Sometimes it makes me hot, sometimes it makes me a little edgy, sometimes it make me laugh, but mostly it makes me feel grateful for having come through.

 Tamoxifen is my daily reminder that I had cancer, what’s yours?

Never Say Never

Let me clear. Very clear.  I do not like tattoos.  Never have. I understand people who get them for personal reasons, like putting the name of their husband or wife on their arm (although didn’t work out so well for Angelina first time around—just sayin’) or maybe a ying and yang symbol, or some other symbol that has meaning for that person.  I get it; I just don’t like them for me.  The ones that really perplex me are the compulsive tattoo people, not just one or two, but whole arms, backs, legs.  I don’t understand.  As a note, I’m contradicting myself on this one, because I really, really don’t like tattoos, but an exception is Adam Levine and David Beckham.  Can’t explain why they look hot with tattoos, they just do.  I digress.

 So I’m getting to the never say never part of this blog.  Watch those nevers…sometimes we don’t have control over what comes next.  Like my three little blue tattoos.  OK you could argue they are not really tattoos, but to me they are.  Permanent blue marks on my body.  The say YOU HAD CANCER.  A reminder that I laid on a table for 33 days, while beams of radiation were lined up to those little dots.  33 days where 4-5 people stood over me and adjusted me while I was laying there topless.  Pushing and pulling me. Drawing on me with sharpies to make sure my dots were lined up just so.  After they got it perfect, they made a beeline for the thick door that shut me in.  You know it’s strong stuff when people want to be as far away as possible from you while you get zapped.

The day I got my tattoos is still vivid in my mind.  I had my cat scan first and then the two technicians were using those damn sharpies on my boobs.  Such a strange things.  So sweet Janice is chatting away, commenting on the color of my nail polish and then BAM she stabbed me!  Sweet Janice stabbed me!  She apologized and said it was better if I was distracted for the first one.  The other two went fast, not any less painful, but it was over quick.

 So now I have three blue dots (If I had to have them, why couldn’t I pick the color?  Purple?  Turquoise?  Something other than the blue-black that they are.  A permanent reminder that I have a before and after in my life.  Never say never.  What marks the change that cancer has made in your life?  How do you see your self now?  …….Me? The three tattoos make me feel a bit like a badass biker chick…kicking the crap out of cancer!

Crap happens, so what are you going to do about it?

Have you ever felt compelled?  Really, truly, wholly compelled?  I have.  GO Lisey is about a vision, a feeling, a desire to make the scary, the crappy, the painful stuff in life better.  A year ago, I was going through radiation, feeling depressed going in to that closet of awful hospital gowns, and I knew I had to do something for myself---seriously the fabrics on those things were from the 50’s, they reminded me of bad, mint green formica!  The best design out of the bunch was snowflakes and it was Spring and dammit I didn’t want to wear snowflakes in April!  Those stupid hospital gowns made me feel like I had cancer, like some sick person and that was not who I wanted to be.   So on April 12th, I declared that I was going to make my own gowns.  I was having a Kick Cancer’s Ass party with my girlfriends (note—this is a great idea.  Only fabulous, killer shoes allowed) and I told them my idea and they cheered me on.  

I made my own gowns and everyone who saw them or heard about them, connected with them, a visceral connection to the concept.  They got it.  People understand that life keeps coming and it’s how we approach it that matters.

I kept revising the gowns, tweaking them, trying to get it right…or at least so I could have it cover my back and still be able to slip it off on the radiation table!  I’m not the best seamstress in the world, but I kept sewing anyway.  The radiation technicians offered up ideas, the oncological nurse had thoughts, the whole team took an interest.  As a note, the only other homemade gown they had ever seen was a Super Woman cape which sounds fun, but not exactly my style either!

By Easter last year, we were floating names up for a company and GO Lisey was in motion.  It took on a life of it’s own.  I became bolder, determined, tenacious in making GO Lisey real.  People, resources, connections aligned to help me along the way.  Being compelled does that.  It truly does.

The vision for GO Lisey came to me as I was waking up one morning (that delicious space between dreaming and waking) and I knew with all certainty that the vision of GO Lisey was to uplift the daily mood of patients and their support circles.  Verbatim, that’s what hit me.  

So today, I am welcoming the first of many products to the come, the Glam Gown.  Meant to inspire inner Glam, a positive outlook, and just plain feeling fabulous.  

GO Lisey is about doing something with the crap that happens.  What will you do?