Thursday, February 25, 2010

'toxic' positive thinking

Through-out my treatment one of the things people would say to me would be about perspective, or attitude. Now, don't get me wrong, this is a perfectly fine thing to be saying to someone, especially when theirs' is good. In my case, I do have a good attitude, though not necessarily about my cancer. I don't believe in my mind that I will never see this disease again, and that this is my one and only time to conquer cancer. Rather, I have a 'wait and see' attitude. More cautious then optimistic. I was speaking with my friend, who also had breast cancer about this very thing and imploring her to find the 'reason' or life lesson that we learned through this experience. Her comment was "Why are you putting such pressure on your cancer??? Maybe there's no lesson...maybe it just happened." Another said to me 'Imagine if every time that you had a cold or a flu or something else you expected that experience to 'teach' you a lesson. You'd always be disappointed!' Good point. I may never know. And, to that end I must also circle back to my original thought about positive thinking. I know that there are plenty of people out there with a surly, negative, and grouchy nature that just sail through cancer and treatment and never look back again. I also know that there are plenty of positive, laughing cancer victims. I've decided that my thoughts can't change my destiny, but I sure am going to try to have as much fun as I can on my way.

I remember being very little and riding in my cousin's car. They were a few years older than me. They were talking about a girl that they had just waved to on the corner. I even think I remember her name..."Alyssa". Anyway, they were telling each other that Alyssa's complexion was horrible...just riddled with pimples...but, that they never noticed because she was always smiling and had such a beautiful smile. That experience somehow imprinted upon me and throughout the dehumanizing side effects of chemo I remembered to smile. I'm sure that this is what people saw as my 'positive' outlook. I know that for me, remembering how to have fun and move forward past the indignities of baldness and weight gain and orange circled eyes I always had my smile. That never went away. And the pressure of trying to find a life lesson or 'think myself well'...sure...whatever (I say while smiling)...

Tuesday, February 23, 2010

I thought this was the 'home stretch???'

I've just come from the Oncologists office and not only did he admonish me for not taking blood pressure medicine that my heart Dr and I have been talking about, but also he would like me to KEEP my port for another THREE years for medication he would like to prescribe, Zometa. Yes, I realize that this could be the thing that saves my life, yes I realize that the studies look promising, but I want to be DONE...I want this to be OVER, I want it to finally be BEHIND me, and I thought I was getting there. Just yesterday I scheduled the complete hysterectomy for April. Just yesterday I was looking at the incision around my port and thinking that they weren't so bad....Now the recommendation is to extend the infusions by another 3 years and I just want to be done. Short sighted I know...and I'll feel differently tomorrow, but DONE, DONE DONE!

And let's not put aside for one moment the fact that I of course went onto the internet, looked up this drug, saw that it is for bone metastases and got entirely paranoid that I have this too. Wasn't the Dr looking at my labs when he suggested this???? Did something cause him to suddenly think that I need this??? I'm upset all over again and paranoid and confused....! In a moment, they've erased the pseudo calm I was feeling about leaving 'patient' behind and moving onto 'survivor'. In an instant time has actually reversed a full year and my sinuses have cleared out as adrenaline floods in. It's fight or flight and I'm on my way....

But, not until I look around the web just a little more...and ahhh...there it is. The article that instantly makes by sky-high anxiety drop out of the stratosphere and back down to earth.

http://www.bcbs.com/news/wellness/bone-building-drug-zometa-fights-breast-cancer-spread-in-younger-women-may-lead-to-wider-use.html

Ahh...

I revert back to a conversation that I had with my Aunt Carol (a 3 time BC survivor) almost a full year ago. I was newly diagnosed, and crying I asked "Auntie...what do I do???"

She..."Whatever they tell you to"

But for the Grace of God Go I...

Now what do I do?

First...I cried. I was scared! I didn't know what to do first! My OB/Gyn, though seemingly supportive clearly handed me off to a breast surgeon. The office called to 'see how I was' and to give me a listing of referrals, but really left me to my own devices. Luckily, one of those referrals was to an amazing surgeon, Dr Linda Liu. Now, here's a Dr who spent the time with us to explain over and over what everything meant, what path options we had and really DID hold my hand. She spent HOURS with us explaining not only her treatment recommendations but other treatments as well. For one visit I brought my best friend, Jodi, who is herself a Dr. Even she said...'WOW'. I knew that this was the Dr. for me! I did visit many other surgeons, because I knew that even if everything was spirally crazily out of control...the due diligence required for any surgery was something that I could control.

Not that everything was clear-cut and easy after that...

Monday, February 22, 2010

Life's Perspective

On Wednesday I went to the supermarket, list in hand for a 'major' shopping expedition. As I shopped I spoke to a few friends...and before I realized it, the clock had spun away and it was time to pick Race up at the bus stop. I was really only two-thirds of the way through the grocery store, but had to make that bus. When I retrieved my little guy I let him know that I had missed a few things while shopping and so our first order of business was to head back to the store. But, when we got out of the car I got a phone call that all of my tests had come back clean and clear! We whooped it up and did a little anti-cancer dance in the parking lot. I told him that I was now cancer free and wasn't that great news! Race and I completed our shopping and when we got in the car I asked him if he'd like to share our good news with his dad!

"YES!" He answered..."I'd love to give him the great news!"

I gave him the phone and when Josh answered he excitedly said "Dada...we have great news!"

"What's that?" said Josh

"We got you bread!!!!" exclaimed Race

we laughed and cried together....

Angels

his has been the longest year of my life...and certainly the longest summer of my existence. Currently, I am recovering from round six and final of chemotherapy. I can't wait until the side effects are over and my body begins to recover. New hair, new nails, new cells. The last phase of my cancer treatment will be some form of estrogen repression. So, either a surgical hysterectomy, or a chemical one. Believe it or not I have my toothbrush in hand ready to get this over with! I thought I was all done when I unplugged from that last treatment, and I was definitely in shock when they told me I'd need another surgery, but now that I'm looking at my options I feel like I'm ready to go....

But, believe it or not...this is about YOU....yes, YOU. Through this broken rollercoaster ride YOU have been amazing. I have never been very good about asking for help, or relying on other people. I'm just one of those people who likes to do it herself. But each and every one of you, plus many more not included on this distribution has held me up in some way or other. Whether it was an angel on my doorstep delivering a meal, or a surprise bouquet of flowers, or even just constant emails, inquiries hopes and prayers, YOU have supported me in a way that has not allowed me to become depressed, mournful or dour. Because YOU kept me tethered to warmth, love, family and friends. Even at my lowest I still always felt boueyed by YOU. I know I can never thank you enough for all the mitzvahs (true good deeds) you have blessed our family with. Near or far, big or small, delightful all.

As I head into my LAST phase of treatment I know I can make it through to the other side and what's waiting for me there is incredible. I can't wait...

Lines

There is a picture hanging in my bedroom on my side of the bed. I'm not sure if it's a print, or a re-print, but Josh has always maintained that it's fairly valuable...so it must be at least a print. In any case...I have always seen this piece of artwork as drab, gray and sad. I've never liked it, but truthfully, I've never really cared enough about it either way to lobby to remove or keep it in it's place above the bed. These last two rounds however have left me with a lot of time laying in bed where sleep won't bless me and take me away...and so I've been looking at this piece of work.

It's a drawing of a man, who's facing outwards. And of a woman who's back is to us as she is held by him. He's bald...and although he has eyes, nose, mouth, he's really featureless in that he's completely neutral and passive...they both are as a matter of fact. Just two bald heads that are not particularly full of emotion in themselves because in fact the heads don't lean toward each other, they're very upright. Her arms are even to her side. She doesn't return his protective embrace, more just allows it. And, he is not squeezing her, rather protecting her in a circle that allows her stance.

The method of creation of this work is line drawing. Millions and millions of lines. Some areas are thick to darken or shade, and others are thin for lighter 'color'. And the piece is large, so it must've taken a long time to create. Surely longer than I have lain awake staring. The tiny lines make up a greater, more comprehensive whole. The man has his left hand in the forefront and it's grander, larger than the rest, somehow out of proportion. Indeed, it's giant. She, her back to us, hand to her side, seems strong, yet vulnerable too....I can see something here that I never did before and it moves me to tears. Throughout all of this nightmare, my husband Josh has more than 'stood by my side'. That phrase dwarfs his incredible ability to be all things to everyone in this house. Father, mother, husband, friend...defender. Josh has always been these things, but during this journey he has become everything for all, and that is hard to do. He allows me to stand, in my own space, while supporting me. His arms and hands are there, large or small, whatever I need. He'll allow me to stand on my own, or be supported by his strength if need be.

Suddenly this grey and white art has real color to me...it's subtle, but it's there. And it doesn't shout out anything...it's quiet but insistent. It's amazing.

Thank you honey...I could not have come from this being me without you.

Ode to Hair

Let's talk about the big elephant that's been in the room since my March diagnosis. Hair. Countless questions about it...will I loose it? When? Does it come back?

So...here's what I know:

every chemo protocol is different, but mine has a 99.9% chance of falling out. Yes...out, all of it...and, freakishly on day 16. Now...here's how I feel about this:

Everyone I know HATES their hair. It's always 'TOO'

Too:

thick
thin
curly
straight
gray
oily
dry
dark
light
short or long

It's always too. We always want what we can't have. I myself have been to the hair fairy many, many times. Sometimes, I can get away with once a month, sometimes more, much to Josh's outspoken chagrin. (Yes, he did actually say 'well, at least your hair bills will be cheaper'.) In anycase, my naturally curly hair usually gets permanently straightened, and colored and, if I'm feeling particularly cheeky, a highlight or two. When I leave the boutique I must admit that there is almost always an extra bounce in my step. Yet, no matter what, though...there is always the ever illusive goal that I'm striving towards...I am growing it out...growing the bangs out, in between this or that...there's always somewhere to count down to...

So, the prospect of loosing something that I'm not so in love with should seem easy. Especially given that nearly everyone I've spoken to tells me that their hair has grown back completely differently post chemo. Once curly can become straight...and vise versa So, I get to go back to the proverbial gene pool and pick what's behind door number two. Well, firstly, my hair has actually hurt after this first round. And the follicles are itchy. It now NEVER looks good because I refuse to spend ANY money on it if I only have 8 more days to have it at all. So...I'm kind of trying hard to make myself hate it enough to want to shave it off. And, I've gotta say, it's kinda working.

Then, there's the kids. I bought a wig and additionally got a couple of free wigs from the American Cancer Society and thought that a preview for the kids might help ease the shock. My fashion debut was met with shock and horror. My six year old told me to 'take it off mama' and my three year old asked 'what's wrong TO your hair...does it have a boo-boo?' In my mind I had envisioned a playful hour of wig swapping and giggles, but went back to the bedroom and put the 'girls' on their heads to sleep until their time.

I for one have always had big hair. Either curly or straight...it's always been part of my 'look'. I've bought a funky scarf or two and a few rockin' hats, but there's no changing the initial reaction people have when they first see you and realize that you are bald and it's from chemo. Yep...pity. And if people tell you that you look great, what can you really say...? Sometimes I want to be snarky and reply "you mean b/c I'm bald and I so OBVIOUSLY have cancer?" The baldness is the mark of cancer...there's just no hiding it once your bald. And, in case you're thinking 'just throw on the wig' firstly, I will also not had eyebrows or eyelashes...and it's about 100 degrees outside...not quite wig weather. Secondly, let's face it....do I need to get all dolled up to drop Ella off at preschool?

Identity crisis aside, even if you hate your hair, the prospect of loosing every bit of it is scary. Ask even men and they'll agree. It seems so vain to be so emotionally invested in something that's essentially decorative, but it is the one thing that comes up for me and others over and again. Really this entire experience is at some point supposed to give me some PERSPECTIVE and here I am worrying about hair! That being said...I'm worrying about hair.

On a closing note...thank you for all the prayers and love and well wishes....for being my listening board too. You'all have the option to just hit the DELETE key...I have this darn dialogue running in my head!

And why is it that something can be so alluring...gorgeous even...until...it falls in your food and becomes something that can finish an appetite off for that meal?

XOXO

Don't get a kitten before you get cancer

On a lighter note...

Not that you could ever actually PLAN these sorts of things....

But, we got a kitten (Jack) about a year ago last fall. So technically Jack is a kitten for another few months. Well, I know what I 'require' from pet companionship...a loving glance, happiness for the food I provide, and the occasional cuddle no matter how bad you look or smell. Pretty much unconditional love...

Well, This crazy cat must think he's a dog, or some other feral animal...because I am lucky if one of his precious hairs touches me in the form of a floating by hairball much less letting me get an actual stroke. I have to trick him with a treat to get him to stop long enough to pet his silken fur. He isn't wild...and to be fair, when we picked him from his litter we made the deliberate choice to have an 'interactive' animal so that he wouldn't shy away from our otherwise active kids. Well...he's interactive alright...just not with me, and I want to cuddle! He is very busy...he is either a)got the fish in his mouth--no exageration--though he's always put him back in the tank to play another day b)chasing the odd balloon string across the living room on his hind legs or c)batting a feather boa off his face.

He doesn't seem to need to sleep much, nor does he require any contact with his mommy. He prefers just about ANYONE to me...including the kids, who play with him until he is trembling with cat-ness. He'd prefer to eat my wig, chase invisible bugs high on the wall or get stuffed into the kids laundry hamper...just as long as it isn't me and him being affectionate. If Josh calls him, however, he will stop whatever carousing he is doing and charge to his side. Very dog-like in this manner if you ask me...he loves, loves, loves Josh. He'll lick his face and cuddle into him in pretzel like poses. Me...I get 'the paw'. No interest.

So, if you need a COMPANION...I suggest getting either an old one who can't move fast...or one that's done everything there is to do already and can rest a bit...but not a sprightly kitten who is stimulated by the fed ex delivery driver (yes...even he gets the running to the door welcome). Pick one who is maybe hungry and you could put cat treats in your pocket to get a cuddle (I DID try this....all I got was a smelly pocket).

Happy 4th of July Everyone!!!! Thank you for sticking by us....

Hugs and Kisses to all....

It aint easy being green

ssshhh...I think I'm halfway done with this wretched chemo....I whisper it as if when I come around the corner the chemo devil might be waiting for me like a naughty toddler. If I let the devil know that I think I'm half way through it might come 'round and knock me off my feet! Now, I know that your instinct will be to congratulate me on making it half way through, but really I've done nothing to deserve accolades. I haven't actually accomplished anything. In fact, it's more like I've ridden out a bad storm. I've been in bed for at least a week for each treatment, and half-days afterward. And, as I've mentioned before, there isn't a specific side effect to pinpoint to treat. It's not like I can point to my kneecap and say ouch...then put some ice on it...yet, still there was a moment this round when Josh came to my bedside to check on me and asked "honey, are you ok?" and it was all I could do to make my eyeball roll to his area of the bed and focus on him. The concentration on this one thing was so intense and focused that I nearly blacked out from the effort. I wanted him to know that I was in there...alive...and that he couldn't do a thing to help me...but that I was riding out the storm. So went the eyeball.

And despite some very strange side effects (my eyelids both twitch so badly that I've had to pull over to the side of the road for fear that I couldn't SEE) the worst is actually a very bad taste in my mouth that has the ability to taint my whole body with a yuckiness that makes me actually FEEL the taste. It's so odd. I've tried everything on the market to 'trick' this taste away. Jolly Ranchers, lollypops and losenges and mostly they just make everything disappear for a few minutes. Nothing really works...except of course time. Unfortunately, the taste does nothing to my seemingly unstoppable appetite though the only thing that makes sense to eat with my reflux is white food. Oh well...I think I'll save the weight issue for another season.

I hate it when they're right!

Hi everyone!

Day 16 came and went...and so did my hair...in clumps. Lots and lots.

First...my scalp itched...then I'd scratch and my hand would come away with a clump of hair. It was not as alarming as I thought. I think that the movies add significant drama to this step...but it WAS messy! And so...My friend Chastity came over with her daughter and we had bagels...and a good head shaving party complete with 'pump it up' music and a cleansing jump in the pool afterward. Race thinks I look like an old man. Josh likes it, but then confessed that he did NOT like the shorter hair I had last month to 'prep' for the shave. So, who knows the real truth.

I have about a 1/4 inch of hair left, which still comes out when I touch it...but it isn't nearly as messy, but the short hair are very itchy. Hopefully, I will be able to keep the stubble a long time, but I know that I will eventually get patchy, then have to shave off the remainder. Oh well.

I was going to attach a photo here, but it really is a shocking sight to me and I think I'll keep it to myself for a while longer. Race made me wear my wig around the house all last night. "Mama...please can you wear the wig...? I'm scared" I reassured him..."It's still mama, honey...I'm still here..."

Here's what I do know...they told it would fall out on day 16 and darnnit...wouldn't you know it that it did. I hate it when they're right!

My next round starts on Thursday. Please hope for an easy ride....!

Here we go! 6/1/2009

So here we go...I am scheduled to begin chemo on Thursday and from all accounts here's what I am to expect...

Day one...ok
Day two...ok...ok...then not so ok....

Days 3, 4 and 5 not ok at ALL

Day 6 better,

Day 7 through 21 HONEYMOON!

Then we start all over again....

I am currently slated to do six rounds of this...but a new friend of mine who had similar disease and the same Dr. did some research on efficacy and they convinced each other that four worked just as well. Obviously I have some homework to do....

So....here we go....

Sunday, February 21, 2010

How it all Began

It all began in the deep dark recesses of my worrying mind. I was pregnant with my second child, Ella. It was 2006. I kept feeling little twinges and big twinges in my right breast. My OB/GYN performed almost monthly exams, and reassured me that it was most likely my milk ducts preparing to produce milk. As soon as possible after giving birth I had a mammography. I was 38. I didn't point out the spot I was concerned about...and now, years later I wonder if my having them focus on a certain area instead of relying on them to sort through the confusing white clouds on the x-ray would have found everything much soon. I'm sure I'll never know. The mammogram came back fine, and this being what I wanted to hear...I walked away. The second year after my second child I returned for another mammogram only to get the same result. The third year I insisted on getting an ultrasound together with my mammography and pointed and spoke and told and pointed over and over again that THIS, THIS is the spot they needed to focus on.

Sure enough...there it was.

Stage 1 Breast Cancer. A lump smaller than 2 centimeters...I was 40.