Saturday, December 28, 2013

Cracked....

I've been on Herceptin for four years, almost to the day. Long ago, I wrote a post about a side effect of Herceptin that I called the Herceptin Drip.  The Drip, to this day, remains.

Oh, so annoyingly, I might add.  I even sleep with a tissue wedged in my hand and that, my friends, is no lie.

A constellation of things just happened that freaked me out a bit.  First, at my last appointment, when talking to my oncologist, I casually and unconsciously wiped my nose, and he asked me about it. "Do you have a cold?" How long has that been going on?"

I looked at him, slightly stunned.  "Um, it's from the Herceptin, I thought."  I mean, I have had a tissue in my hand and wiped my nose for every single one of what is probably going on 75 appointments now; this was the first time he'd noticed?

Now, I'll sidetrack a bit to tell you that doctors don't infuse subtle meaning into every word they say to you. I have heard people, women especially (okay, almost exclusively women), go back and reprise their conversations with their caregivers and analyze every phrase and even facial expressions looking for subtext. However, there are rarely insinuations in your doctor's conversations with you - after all, they are trained to speak plainly.  Not to mention that many are male (to continue the sexist line of thought) and couldn't come up with hidden meanings if they tried.   When your Kindly Doc asks you if you got a pneumonia shot, for example, he does not necessarily think you are at risk for pneumonia; he did not hear rattling in your lungs that foretells this illness, and isn't worried about a strain going around that may attack your personal self.

What he's really doing is checking off a box in his computer system, one that blinks red if he hasn't marked whether you got the shot or not.  If he keeps seeing you without asking that question and checking the box yes or no, pretty soon bells and whistles go off, the monitor starts to strobe and smoke starts to pour from the computer   If he ignores all that, his license is automatically revoked and he may end up your plumber.  These doctors all are now forced to use "EMR" systems (electronic medical record) and apparently, the insurance company has questions that the doctor must answer, usually regarding preventative medicine. Your doctor, or at least my doctor, doesn't care whether I got my pneumonia shot, he just wants to check the box and save his license.  And, this system is why my doctor may never have noticed my dripping nose before - I was there when they installed the system and there is no place to put a monitor in the small exam room except the counter, which means he often has his back to me.

To backtrack even more, I have a problem with this EMR.  When I go see my primary care doctor, which I still do on a yearly basis (because my philosophy is you can never have too many doctor appointments), their EMR system keeps insisting, against all logic, that I'm overdue for a mammogram and colonoscopy.  Neither of those screening tests are necessary for me since they have found a sufficient lifetime amount of cancer, not to mention I have been in cancer treatment for four years, so what would they do? We also must remember that every 3 months I have either a CT, a PET or an MRI scan looking for more cancer (or, hopefully, less).

The doctor agrees that it is ridiculous and he said he could probably somehow get them to lay off about the mammogram, considering I don't even have all the parts necessary for their test.  But, as a testament to the power of the EMR - he wasn't so sure about getting rid of the colonoscopy screen.  Apparently, the computer is too linear to understand that if you find metastatic cancer from one spot, it counts towards all spots, and it also doesn't understand that all these scans I have are going to find what they are looking for anyway.  A PET scan is just a different checkbox to a computer.  You can't change a whole computer system for one person.   So, when we mutually agreed that this was insanely ridiculous I didn't need a colonoscopy, but he needed a way to get around the strobes, he sheepishly handed me a big card for a stool sample, which is what they give to people who, I suppose, refuse a colonoscopy for creep-out reasons rather than already-having-cancer reasons.

Not that there isn't any creep-out factor with that card.

I kindly meant to comply with his request because I neither want his computer to explode or him to lose his license -  I don't want any insurance company bearing down on the poor guy.  Unfortunately, and I'll be as un-TMI-like as I can - four years of chemo with a c-diff colitis chaser make that request not as easy to deal with as you might think.  Every day is a surprise and this test requires a bit of planning, and I'll leave that sentence where it stands.

So, way back to my nose: when my oncologist asked me why my nose was running,  it flashed that maybe a constant runny nose is not a side effect of Herceptin and I've been wrong all these years.  After all, he sees patients on Herceptin daily - don't they have tissues too?   Of course I read it was a side effect; I did my proper research.  Doctors cannot know all the minor side effects of every drug they prescribe, but hundreds of women on herceptin have reported this phenomenon.  I thought it was a side effect, but it had been years since I'd paid attention to this subject, maybe I'd been mistaken.  I seem to remember those 3 months after the end of my treatment for Stage II and before the diagnosis of Stage IV, when I had my apron strings cut and was off all medications that my nose stopped dripping - but maybe not?

Those were fleeting thoughts because, as the kids would say, whatevs.  It doesn't really matter.  The doctor was probably asking a courtesy question or was worried about catching something himself, or maybe there is a new EMR question about nasal secretions, I don't know, but it is not something I am going to worry about because, honestly?  I have enough on my list.   It is annoying to have your nose flood and see liquid plop every time you look down, but really, the biggest problem that stems from a constant runny nose is I sometimes do my laundry having missed a balled up tissue in the pocket of my jeans.

Man that Kleenex lint is hard to get rid of.

I was happily scrapbooking when heard a radio show in which the hosts were talking about a woman whose nose started running every time she bent over.  My soul sister!  She even said, "I was walking around my house with paper towels shoved up my nose and changing it every 10 minutes."   I hate to admit this but I do that as well;  there is no way I can clean the house without dripping vats of fluid onto whatever I have been supposedly wiping.  Like I said long ago, this fluid is not like mucus, it's just like water. Paper towels are pretty harsh though, and if I didn't have a teenager who would be merciless, I might even have taken a menstrual pad and created some sort of under-nose mask for times when I need to bend over and mop something, or the few days when I cook (because, um, yes and ick!)  I'd considered tampons, but the idea of not breathing sort of bugs me, as you can well imagine.

Anyway, this poor sister woman went to the doctor, who no doubt ran through his EMR questions about her PAP smears and mammograms,  and then decided she had nothing serious to worry about.  It was only allergies (in Arizona?)  he thought, so she left.

Not being able to write it off to Herceptin though, she pursued a diagnosis, only to discover that her dripping was caused by spinal fluid, leaking from a hole in her head and out her nose.

!

Here is the article talking about her, and in another aside, there is a spectacular example of bad writing in that piece, where the author says, "The nurse was shocked when she saw the volume of fluid left on the floor when Aragon gave her urine sample. And when the doctor asked her if she could leave a small amount of fluid for testing, she replied, "I can fill that tube up 20 times over." 

I assume that she had no kidney/bladder problems and they were still talking about cerebrospinal fluid, which makes me wonder what position Aragon sits in when giving urine samples, but yet again - I digress.   Professional writers - please proofread! (I am not professional so I can get away with bad segues.)

Anyway, the woman had graft surgery to cover up the holes in her head and all is well.  No more leakage.

Naturally, that story got me thinking - what if, after all these years of believing I had the Herceptin Drip, there really is no such thing and I actually had a big crack in my sinuses?  It's not impossible to believe since I a) have a deviated septum and b) am an Afrin addict (see a).

This brings up a host of other problems though.  Do I endure another scan to find this mysterious crack? If so, would I be able to withstand surgery to cure it?  Wouldn't it be more fun to tell people that I have brains leaking from my nose next time I'm asked if I have a cold?  On the other hand, would my brain discharge attract zombies if the apocalypse happens?

I had already called my primary care doctor to get a flu and pneumonia shot so everybody has the right checkmarks, which will happen Monday.  Maybe I'll also ask him to check and see if my sinus cavity is opening into my brain.  Why should my oncologist have all the fun?

Nobody who knows me would be surprised to discover I have cracks in my head that were leaking discharge out my nose.  They would only be surprised it hadn't leaked out of my mouth first.







~~~~~~
My dear friends, if you liked this post, and like my blog, please vote for me on Healthline's Best Blogs Contest by clicking on this badge.
Best health blogs 2013
Healthline

The grand prize is $1000.00 which goes straight to my son's college fund - and he graduates this May!  You can vote via twitter or facebook and while it asks for permission to view your friends, it will not use anything.  This is only so that they can post you voted for me, and you can control that.  Although, I hope you encourage your friends to vote too!  Thank you!  

Tuesday, December 24, 2013

Merry Christmas Eve!

Some quick housekeeping notes:  one of the winners of the MedSystem has not come forward - username had "Sew" in it.  If you don't contact me by the 26th, I'm going to give the prize to the next in line.  I'd hate for you not to get your prize so contact me at butdoctorihatepink AT gmail.com ASAP.

Also, please, don't forget to vote for me in Healthline's Best Blog's Contest.  Click here to vote using either facebook or twitter.  Healthline will not use your account for any reason other than to post that you have voted, and you can even control that by clicking on the "x" after your vote, so don't be afraid to give them access.  They have never sent a message into my feed or used my data for anything.  I have been alternating with Maria between first and second place, but I am slowly losing ground and am a solid #2. With her 24,000 facebook fans and my 3,000, I expect that is where I will stay.   However, she posts recipes so if I promise to post a recipe, will you vote for me?  Every day?  :)  (Mine will not be a beautifully photographed meal of delicious gourmet goodies, probably will be a photo of my husband bringing take-out in.  Hey, I do have cancer.)

Finally, I want to wish every single one of you a very Merry Christmas and a Happy New Year.  I never thought so many people would follow my story and I'm grateful for the many friends I've made through this blog as well as through my facebook page  and if you can't say thank you at Christmas, when can you?  I count among you some true friends and I am so grateful for your love and support all year long.

To those of you who have been helped by following my story and reach out to tell me - thank you.  Your words keep me going, keep me wanting to describe living life with end-stage cancer.   I certainly hope that I will be able to keep healthy enough to keep up with this blog for part of 2014 - dare I hope for all of it?   This year will be a good one for me  - my son will graduate from high school, my stepdaughter will have her first child, and I intend to be around to see those things.  I will also hit my 3rd anniversary with mets to the liver - after that I will have outlived my prognosis, which as everybody knows I am stubborn enough to do and then some.  I would like to make it 5 more years, like my friend Sandy did.  Think of all I could see in those five years!  Why, I could see my son graduate from COLLEGE.

But in keeping with our three month limit, in the coming months in this blog, I will have another contest or two, I will share with you my experience being photographed by a true artist, I will maybe talk a bit about my childhood and young adult years, which enabled me to deal with advanced cancer the way I have.  I will post part #2 of the "how to live with cancer" post that I had promised.  I also intend to share with you my scrapbook pages and a wonderful thing a scrapbook company did for me.  There are many delightful things in my life, as diminished as it is and as controlled by pain meds, and I want to share them with you.  The lessen learned so far is that you don't have to be active to enjoy life.  Small, peaceful things are equally gratifying.

Now I have family coming so I need to bake cookies and get food ready.








Thursday, December 19, 2013

Sandy Kugelman - RIP


Our last private communication  was my son's birthday, October 27th. It was the last of about 800 messages sent back and forth since July of 2012. Responding to my gentle inquiry, Sandy said that "things are strangely better now" but that she didn't want to share that news publicly, because then people would want to come over and visit, and finished the message with her famous "BWAHAHAHAHA!"   Sandy was always able to find humor even in the most dire situations. She could tell me how absolutely wretched a physical experience had been, and in the next sentence, make me laugh.    By the end of October, she said that her family was coming to take care of her. She hated to admit it but she was no longer able manage, or at least to care for the dogs and her beloved chickens as well as herself. Her son, (the same age as mine), should not have to do it all, she reasoned.  Of course, we all know he was the forefront of her mind in deciding to accept help. She loved the chickens, but it was not about the chickens.  Her kids, "her sweet babies" were what she was about.   She was upbeat but I feared that there was probably not much time.   Hope is powerful though, I told myself that she'd had scare after scare and recovered, and I allowed myself to believe that she would end up okay again.

But not this time.

Sandy was my guide and my mentor but not only mine - hundreds of people relied on her.  She had metastatic cancer to the liver, later lungs and finally brain, dealing with this disease for 9 years, a remarkable feat. (Our prognosis is 2-3 years).  She reached out to me for a reason I no longer recall, and we instantly began a friendship that became my safety zone.  I could say anything to her, anything at all, and she understood. And, she could say anything to me, and did. She called me "Sisterann."  Over the course of those 800 messages, we shared all of our darkest thoughts on this disease, what it does to us, our families, our loved ones.  We discussed the cancer wannabes (yes, they are out there) and how to manage those well-meaning friends who bombard us with their cancer curing diets and tips.  We shared our thoughts on Pink Culture, and how it creates those wannabes.  We discussed hospice and various treatments and chemos and bodily functions and vomiting and weight loss, we discussed our families, we shared pep talks and downer talks.

She chastised me publicly once when I said I was skinny.  No!  I'm heroin chic!  Like her!    We had each other's backs and if we saw something online we didn't agree with, we'd poke the other and both go post our agreement and support each other and our shared opinion.  I am an almost-Jew, a wannabe Jew, a descendant of Jewish people - a long line of Rabbis interrupted by the anomaly of my secular dad falling in love with a Catholic girl. (I suppose I could think the opposite too - I come from a line of Irish Catholics interrupted by my mother's marriage to a Jewish fella - but I don't.  To me, the Irish is the anomaly, the Jewish part is my heritage.)   Sandy totally welcomed me into the tribe, sharing her holiday traditions with me, explaining them, pretending like I belonged, even knowing that I am a non-believer and know very little about her religion.  She would throw in a "you know, the way we Jews like it" into the middle of a conversation, like I belonged.  Considering that her religion was very important to her, her inclusion meant a lot to me.

Often,  in our notes, we complained about our disease, in gory detail.  We bitched about how we felt, our symptoms, our pain. We could tell each other exactly how bad it was, without having to worry we would scare somebody, or be told to stay positive, or face somebody's fear and denial.  Cancer is a roller coaster, so of course, sometimes we felt good and we would share that, with joy and hope. But oddly enough, we never felt the same way at the same time.  - I would be up, she would be down, and vice versa.   Once she told me, "I sure do miss the days when I was the one doing well and YOU were doing shitty.  BWAHAHAHAHA!!!"    So Sandy.

When she got brain mets, our private communications slowed to a near stop.  I checked in now and then, but writing was hard or her and reading even harder; she complained about her vision and her difficulty understanding words, which frustrated her to no end.  In keeping with our relationship,  I didn't want to put pressure on her so I let her go.   I posted on her wall now and then to let her know I was thinking about her - sent her a hand-made card, but let her be sick without needing her.  Truth is, I did need her and always will.   I was there if she felt like she could chat.  I know she knew that.  But she knew when it was time for friends and family.  She knew when it was time to delete our messages, which she said she had done.  I can't, not yet.

"You are my encouraging friend who GETS IT and may you and I always be a team, helping each other out when times get rough.  I love you dearly, soul sister."

I know that people say you can't have a full-fledged relationship with somebody you have never met.  To some extent, I agree with this.  People are so much more than what they can write.  You miss expression, nuance, that fleeting frown or slight smile that helps this human species communicate.  Yet, when somebody can write, and does,  they are so much of what they say, and the thoughts are deeper than what can be shared in conversation - all the distractions are gone and the communication is  pure.  When they feel like they can lay it all out without repercussion, you do get a true picture, and you do develop a real relationship. Had we more time, had we been healthy, I'm sure we'd have one day managed to meet.  But our relationship was about cancer. It branched out into talk of life and family and our worlds, but it started because of cancer, and it ended because of cancer.

Cancer took her on December 6th.

The outpouring of love online since her death has truly been amazing.  I've been in this Cancer Community for four years and I've seen nothing like it. I believe that is because Sandy had a way of making each person feel important, that each soul mattered to her, whether you ever met her or not.

So I mourn this woman who died of the disease I will die from.  I have lost the one person who understood, who shared my hopes, my fears, who also lived this unique experience and therefore was completely nonjudgmental.  I miss her, although I'd never seen her eyes or heard her voice.

As Sandy once said to me, "I love your soul and we've never even met."    You too, my friend.  Rest in Peace.





Don't forget to vote for me in Healthline's Best Blogs contest.  And, one of the three winners needs to contact me about your MedSystem, so if you won and have done done so, please do it quickly or I'll have to give it to the next in line! 

Saturday, December 14, 2013

And the MedSystem Winners are...


Announcing the winners of the MedSystem Center....Top three gets one!

Drumroll please.....

  1. Kimlopark December 5, 2013 at 6:54 PM
  2. ~Dawn~ December 12, 2013 at 10:09 AM
  3. SheSewChic December 11, 2013 at 1:17 PM
If any of these three do not contact me within 7 days, I will select from the next three on the list, who are:

4. Melinda PayneDecember 5, 2013 at 7:16 PM
5. Mary Jo KaczmarskiDecember 11, 2013 at 5:01 PM
6. Diane SiburtDecember 5, 2013 at 7:13 PM

If you are a winner, email me your name, your address at butdoctorihatepink AT gmail Dot com, and I will contact the MedSystem folks, and they will ship your center out to you.

~~~~~
How did I determine the winners?  I made a list of the people who entered, see below.  Then I went to random.org and plugged it in and hit the randomizer button.  Tada!

Congratulations winners!  Please contact me by Saturday December 21.



bourscheidmomDecember 5, 2013 at 6:26 PM
AnonymousDecember 5, 2013 at 6:40 PM
AnonymousDecember 5, 2013 at 6:45 PM
KimloparkDecember 5, 2013 at 6:54 PM
Diane SiburtDecember 5, 2013 at 7:13 PM
Melinda PayneDecember 5, 2013 at 7:16 PM
Katya02December 5, 2013 at 9:24 PM
AnonymousDecember 5, 2013 at 10:30 PM
ToriDecember 6, 2013 at 12:51 AM
Sue Ann ReinerDecember 6, 2013 at 3:29 AM
CarolineDecember 6, 2013 at 4:57 AM
GhalesDecember 6, 2013 at 8:04 AM
~Dawn~December 6, 2013 at 11:06 AM
SueDecember 6, 2013 at 2:04 PM
dianeabbyDecember 7, 2013 at 9:44 PM
Kim BelcheffDecember 8, 2013 at 1:01 AM
elizabeth starlingDecember 8, 2013 at 8:08 AM
susie kingDecember 8, 2013 at 3:50 PM
Kim KendallDecember 9, 2013 at 1:25 PM
LaCindaBDecember 10, 2013 at 8:23 PM
SheSewChicDecember 11, 2013 at 1:17 PM
MariaDecember 11, 2013 at 3:28 PM
~Dawn~December 12, 2013 at 10:09 AM
Mary Jo KaczmarskiDecember 11, 2013 at 5:01 PM

Wednesday, December 11, 2013

Beauty and Memories

The day I discovered I was ugly, my curly black hair brushed against my shoulders, tickling, warm as the sun burnishing my skin.   My hair, no matter how many years between cuttings, would never get long, no matter how old I got, but once I could feel it touching my shoulders, I felt lovely. I still prefer it longer and am sad that cancer has taken that away from me.  My sister had really beautiful hair, (still does) long, light,  fine, straight and shiny.  Her eyes, too, were a changeable hazel/green  and she had light skin and a normal shaped body.  On the contrary, I was dark, with frizzy, thick, black, curly hair - not only on my head but legs, with caterpillar eyebrows and a mustache.  My eyes were muddy brown and I was skinny as a broomstick.

In the 1960s I still was not aware my appearance was a problem and the neighborhood kids didn't do much teasing back then, or at least, no more to me than anybody.  I was called chicken legs and twiggy but everybody was called names.   I knew my sister was prettier than I was, but I was older, it seemed to even out.  I just knew we were different, and because I could tan and she burned, I felt like I got an okay deal.

As younger children, we wanted the same thing in regards to appearance - long hair.  My sister and I would pin towels on our heads and pretend it was hair, brush it back and dance with our newly waist length hair, or we'd pretend to be mermaids, swimming in our sunken living room with our flowing towel hair.  In real life, hers did get long and mine wouldn't grow.  But, she had to sit there with her thin, easily tangled hair, my impatient Irish mother brushing it, trying to untangle it and pulling hard, tears in my sister's eyes spilling down her cheeks. I remember feeling sorry for my sister and so offered to take over the job.  I knew to start at the bottom, holding handfuls of hair above where I brushed so she would not feel pain.  Because of the texture of my hair, I escaped the regular torture that I didn't have an older sister to help with.   I still needed my hair brushed, and earned a smack on the head with a brush if I moved, but because my hair was thick, I didn't endure it as as often as my poor sister.  The only problem was that it brushed into a fuzz ball.

The day I knew, I was about ten, walking home from Raley's grocery store with a bag of sunflower seeds and a coke.  Back in those days, you got your soda from a machine.  You dropped your dime in, a cup came down, followed by crushed ice, then the syrup mixed with carbonated water flowed.  Magically, the soda always filled exactly to the top of the cup and when it stopped, a plastic door would unlock, granting you privilege to your sweet drink. You pulled the paper cup out carefully because it was pinched between two prongs, and if you squeezed too hard, you'd lose some precious soda. Every once in a while, you lost your dime but got a show.   The paper cup would come down sideways, and then the ice would come down like hail, bouncing off the cup like jiffy pop.  Next the soda would splatter everywhere, creating an upside down fountain, brown drops sliding down the stainless steel container, stickying the plastic door, dripping through the open steel bars on the bottom that were made for such a contingency. You could not slide up the plastic door up at any time during the filling process to straighten your cup,  so you had to helplessly watch your drink and your dime disappear.   I wondered: what happened to that spilled soda?  Did it get recycled back to wherever the new soda came from?

Most times though, the machine worked and you'd get your Coke.  Being ten, you could walk home, alternating a sip of sweet soda mixed with the salty munch sunflower seeds.  We kids became expert at spitting out the shell..  

Sacramento in the summer was hot.  Egg-frying hot we called it, and every year on the hottest days, one of us did steal an egg from our mother's refrigerator and crack it on the sidewalk.  They never did fry but would get white around the edges.   We'd get bored waiting for it to cook and leave to go ride bikes or play army, where the boys would be soldiers and the girls would be nurses, none of us complaining about gender inequality.  The forgotten egg would stink for a while and then creatures would get them. Or, the weekend would come and our fathers would wash them away with hoses, we never knew.   But we kids, who lived in the court on Grinnell Way in the '60s, we would go barefoot even in the egg-frying heat -  even though it was over 100 outside. Our feet must have been made of leather, built up with calluses to withstand it.  We did have flip-flops and Keds, which our moms would sometimes make us put on, "It's hot out, put your shoes on!"  but barefoot was the style, a reflection of our freedom, and to this day, I rarely wear shoes unless I leave the house.  We kids were allowed to run free back then, no play dates, no planned activities, no restrictions. Summer was for us.  We would take our allowance or beg for 15 cents and go to the store almost every day,  barefoot.  To get to Raleys, we would stick to grass as long as we could, than when we got to main streets we'd hop on the asphalt from shady spot to shady spot and try to find painted lines to walk on.  There were no bike lanes in those days, so the painted lines were in parking lots, where we'd walk zig-zag to get to the store in order to keep our feet cool enough to not burn.  Once inside the store, the cool, air-conditioned tile on scorched feet was like balm and we would walk around until we felt healed.  Then, we'd pay for our treat and hit the soda machine (which was outside the store) and walk back home; for me,  knowing a book was waiting if somebody couldn't play.

On this summer day that I remember so clearly, it was hot as usual but slightly windy which made my hair blow in the breeze. I felt beautiful, exotic, tanned.  I felt each tangled curl against my face; my shoulders.  I imagined that everybody seeing me going down the street was wondering who that girl with the magical hair was and where was she going?  I'd smile at cars that passed, figuring they noticed my lovely hair and my dark skin. Close to home, I walked down the center of our court, hot feet ignored, and I'd shake my head to move the hair.  I was gorgeous and I knew it.

The rest of the day was vague, but probably like all the rest I had in the summer.  I'd meet up with friends and we'd climb trees, or play "pretend" games or dress our Barbies.  Summers were magical.  Our moms mostly didn't work and didn't mother the way we mother now, or at least, mine didn't. We would get breakfast and then be kicked out of the house, told not to come home until the street lights came on.  We were free to ride bikes, run in and out of each other's houses (Michelle's mom always had pickles, Patty's mom made cinnamon toast). Lynn was good for stealing her mom's cigarettes and her Dad was the first person who ever had remote control on the TV, the cord snaking from the TV to the handrest of his La-Z-Boy. Me, I had a pool in my backyard,  but couldn't have friends over to swim too often as somebody had to watch.  My mom was too busy and the filter was always full of frogs.

My favorite thing in the world was reading, and I would find a tree, sit under it with my treats, and read about girls who had fascinating lives:  Scarlett O'Hara, Marjorie Morningstar, Mary Frances Nolan, and sometimes a boy such as Herbie Bookbinder.  Books were my solace and my pleasure and I escaped into them daily.  My friends liked to read too, and we would "read" together, sitting under the shade of a tree, grass tickling our tan legs.  I thought back then that reading would be the one thing I would want to do, even on my deathbed.  Now that I am close to that bed, four years into chemo, it's rare when I can concentrate on a story.

Whatever I did that day of the glorious hair, that night, I was in my room and heard my mother and father discussing me with concern: a serious, quiet conversation.  It is my father's voice that stays with me.  "Ann has to do something with that hair, she looks terrible.  I can't have my daughter looking like that."  The words struck me to my heart.  I had gone from feeling beautiful to feeling ugly in an instant.  My own father said so. In my memory, the conversation continued for quite a while, me hovering in front of the closed door: how hairy I was, how awful I looked, how difficult I was when it was time for a haircut, my bad teeth that would need expensive braces,  how my mother didn't know what to do with me, how much prettier my sister was. Later, my father called me in and asked me what kind of haircut I wanted.  I had liked my hair so I didn't even know how to answer that question. He had put the responsibility on me, which was something they often did.  When I said I liked the way it was, I was considered disrespectful, and yelled at.  I was somehow at fault for my appearance.

Alone in my room, I realized I had not been beautiful walking down the street that day, and my imagination switched -  people who had seen me were probably laughing, not admiring.

That was the last time in my life I felt free and beautiful.

Like that coke machine, the cup had unexpectedly come down sideways and my self-esteem splattered.

Of course, in later years I found other things to be proud of about myself both physically and more importantly - mentally. I'm a loving mother, I'm a good cook, I was great at every job I had.  But I have always felt unattractive, and I wonder what would have happened if my father had ever said, "Ann, you look beautiful."  The closest he ever got was telling me at a Father/Daughter Dance that I'd given him a hard-on. Both of my parents were alcoholics - the serious kind, the kind who drink a liter or more a day.  So, while that might have disturbed another girl, to me it was normal.  I was a teenager and he was drunk, and he apologized the next day when he sobered up and I told him that it was okay, I even said it was normal.  To me, it was.  But it really wasn't, none of it was.  But it did teach me what was of value when it came to beauty.  I ended up the girl with the ugly face, but the big boobs, and that would have to do, and hey, that's what men want, including my own father.  With a mastectomy, I had to let all that go.

In later years, he continued to find his progeny unattractive - he complained about his 10 year old granddaughter and her weight, although it was more of a complaint about her parents and how they allow her to eat.  She is a lovely girl with the long hair I've always dreamed of, and back when she was allowed to spend time with me, I combed her long fine hair exactly the way I did my sister's.  She was hardly fat by today's standards, although I don't know what she looks like now.  The truth is, my father wasn't able to find the beauty in some of his family and really, much of his life,  and so left us to struggle to find it in ourselves.

Our world today is so full of pressures on women to be beautiful - so much more than it was back when I was young.  I'm not sure how young girls who are average looking, like I was, and who live in dysfunctional families, as I did, can find their own beauty when they do not have supportive people in their environment. The pressure of modern society is tremendous.

This story leads somewhere:  I was recently asked by a professional photographer if she could take my photo,  and this memory came back to me, along with all my insecurities.  I wanted to say no, as I have never liked having my photo taken, and do not see physical beauty in myself.  In video, when you can talk, you can explain, there is movement, and liveliness and more shows.  When it is a still photo....you are bare, you are only your body.  Or so I thought.  When I saw Anastasia's photos I realized this was a woman who could find beauty in reality; she was an artist.

I'd long ago promised myself that if I was offered an experience because of this blog, and my health allowed, I would say yes.  In health, I'd said no to many things in my life, because of fear, because of lack of confidence, because of family obligations or time or a job - and my chances at yes are dwindling.

So I said yes.

The scene is set and the pictures and experience with Anastasia will be in another post.  And, I may continue to blog about some of my other memories occasionally, as there is more to me than just cancer, and some of what I've experienced has led to the way I have dealt with this disease.









Please don't forget to vote for me in Healthline's Best Blog Competition.  You can vote once per day and the prize is $1,000.00.  As always, it will go into my son's college fun.

Thursday, December 5, 2013

Giveaway and Review - MedCenter System

It's not a secret that cancer patients take drugs.  As do the elderly and most of of the people in this country. And, if you take more than one, like I do, then you end up having pill bottles stacked around. Not only that, but if you have chemo-brain, you might not remember how many pills you have taken in a day.

I know I have done this - had a day of pain and likely taken more than prescribed.  On the other end, I've had days where I felt good and didn't take any, when one of them is supposed to be taken anyway to keep the pain control at a steady level.   Non-compliance with medication is a huge problem in the medical world, and a lot of it is accidental.  "Did I take my pills today?  Hmmm.....well, I guess I better take one/skip one, just in case."   So, when I was asked to review this MedCenter System, I didn't hesitate.

The MedCenter System is not one of those weekly pill counters that still leaves you with bottles of pills in your bathroom or bedside or kitchen - several types of which I've tried and discarded.  It seems silly to only use it for a week when you have a month of medicine.  This system has the entire month at your disposal in a very handy and neat-looking form factor.  Not only that, it comes with a timer that you can set for up to four times a day, for your morning, afternoon, evening and nighttime meds, and will remind you when your next dose is due.  Each case end has a different color - green means full, red means empty and you can see it at a glance.  There is a little tray marked "today's pills" and you take that case out of the stand, put it in the tray and take your meds at the appropriate time of the day, and then when you put it back that night, you turn it over to the red side, and pull out the next days pills.

There are only two problems that I have found using this system.  One, the containers can be difficult to open at first.  I had a spoon sitting beside the system so I could open using that instead of my fingers. It has a little curve on the side so a spoon will just pop it open.   If you are setting it up for an elderly parent, you may want to open and close each case for a bit to loosen it up, and show them the spoon trick.   They do, however, loosen, and not all were tight - 90% of them were easy to use straight from the box.  The other problem is that not all of us get a monthly supply of pills at once.  Some of mine are every ten days, some every month, and that happens at different times during the month. I used to save all the bottles so I'd see how empty they were getting and know when to refill.  Instead, I now keep a little pad and paper behind the system with the prescription number and refill date (which I also put into my calendar).

The best part is that I don't take too many meds per day anymore. If I'm having a bad day with pain, then I just know I have to take what is in the container and not keep reaching for the bottle, possibly overdosing myself and then have the problem of being short at the end of the month.   But the best best part is that I have my counter cleaned up.  I keep mine in the kitchen as it is the handiest place.

Before:



After:


As you can see, there is an open spot for your nasal spray, if you happen to be addicted to Afrin like I am.

This is an excellent product for anybody who needs to take medications and I highly recommend it.  It would be especially handy for a confused elderly person but is very useful for me too.

Not that I'm not confused. Or, by some people's estimating (hello son), elderly.

So, where do you get one?  Well, the MedCenter System products can be found nationwide at a variety of retailers including Walgreens, as well as hundreds of .coms, including our favorite store, Amazon.com

But, in honor of this month of giving, the company has agreed to giveaway not one, not two, but three of these MedCenter Systems to my readers!

Here is all  you have to do.  Go to https://www.facebook.com/MedCenterSystems and "like" their facebook page.   Then come back here, leave a comment telling me you have done so, and I will randomly choose a winner.  You must comment by noon on December 12th.   You may remain anonymous in your comments but you will have to share your name and address with me privately if you do win so you can be shipped the product.  The company promises it will ship as soon as they get it, so it might make a nice Christmas gift.

Oh, and if you can, please take the time to vote for me on Healthline's Best Blogs contest.  Not a requirement of entry but I would appreciate it.

 The contest is closed and the winners will be announced this week.  Thank you!

Thursday, November 28, 2013

Happy Thanksgiving

I am so grateful that I am around to celebrate this holiday again.  I'm thankful for my family and friends, who have been so supportive. I'm indebted to my medical team: nurses, doctors, assistants - who keep me going and are so kind and caring.   I appreciate all of my blog readers, facebook followers, whose comments and posts keep me going.  On those days I'm so sick I can barely move, one of my first thoughts is you all.  Who knew you'd be integrated into my life the way you have become?

I hope you each has a wonderful Thanksgiving in your own way, with friends and family, football and turkey.  But if this is not your holiday, if you are reading this from another country, than just take a moment today to be grateful for what you do have - as we all should ever day.  No matter how difficult life can be, there is always one good thing, whether it is a purring cat, the way sunlight catches on a leaf, or a hot shower with a delicious soap.  The simple things, ultimately, can keep you going.

Happy Thanksgiving,

Love,

Ann






(PS:  Don't forget to vote for me on the Best Blog Contest.  Due to technical problems, people could not vote for me for a week so we have some ground to make up! )

Wednesday, November 27, 2013

Healthline's "Best Blog Contest" Begins Again

Last year, I won this contest by the skin of my nose.  To be honest, I didn't think I would be around to enter it this year.  Remarkably, I am still here, thanks to Perjeta and Gamma Knife radiation.

I had thought, when told I was nominated again, that I may not do it.  I dislike the nagging, the reminding, the problems.  I don't really have much of a competitive spirit.  I get sick too often to even vote for myself everyday and wouldn't that be guilt-full if I lost by one vote?

But I asked my friends who post on facebook, and to a person, they said to do it again.  And, I can't turn down a potential $1,000 prize for my son's college education.  He's a senior, he graduates THIS YEAR!   So, I've decided to participate again.

You can vote right here:  Click on but doctor i hate pink. (I don't know why it's in lower case this year.)  You will need either a facebook or twitter account to log in to vote.  They use your facebook account to post that you voted for me, but you can click the "x" if you want to keep it a secret. They will not spam you throughout the year, you don't need to worry about giving them access.  Better yet, share it and ask your friends to vote for me too.  I'm currently in 3rd place and my dream would be to get so far ahead so quickly that I can ease up on the reminders.

This month I will have three giveaways for you, in honor of the month of Thanks and the Season of Giving.   So, most of my upcoming posts will be about you all winning prizes but I do have one or two written about my past and how I came to be "me."  I think it may be time to "go there."

Now, I have chemo today so I must get ready.  Whether I win this contest or not, the fact that I've lived to see it come around again is truly a gift.  I wish everybody who is participating good-luck and good cheer from me.






Thursday, November 14, 2013

"Take a breath.....Hold it.....Breathe Out...."

You all probably recognize the title as what a CT machine says to you  in a sing-song way when you are laying there on the scanner, warmth wearing off the blankets,  curly cue cord of the IV in your arm ready for contrast to be pushed into you remotely.

I finally got frustrated at my endless night of sleep, listened to my family, and called my doctor a few days ago, telling him I was not able to wake up.  When I made the call, I had gotten out of bed, struggled to the dining table, and was breathless, which his wonderful assistant could hear over the phone.  I told her my big problem was fatigue but she seemed concerned about the breathlessness and hey, at the time, I was really breathless, she was right.  My body had been in bed for more than a week straight, moving and talking on the phone was a struggle, and I had to pause between every word to get air.

Naturally,  they called me into the oncology office to get my blood checked.  Anemia made the most sense. Getting there was a hard task with my exhaustion, particularly getting dressed. Fortunately, my son has not started his new job yet and was able to drive me.   I was afraid I couldn't stay awake on the road, and I felt too weak to drive myself.  When my blood came back as being non-anemic, even in the ranges of you normal people, the doctor scratched his head and sent me off for a chest X-Ray.

Okay, he wasn't actually there so I didn't see him scratch, I'm just assuming.

That X-Ray also came out normal.

I was willing to leave it there. I'm feeling a bit better, awake more; I was up for hours yesterday, and although I have been availing myself of ritalin - it is working unlike before.  I got up at a normal time today, much to my cat's dismay. I'm still lacking in energy in an extreme way, and I feel weak,  but am not sleeping all day. Then his assistant called and left a message, saying the doctor wanted a scan.

In my head, I was thinking maybe a PET so I was okay with that.  To be honest, if anything is wrong with me cancer-wise, it seems like it would be my brain going wonky and wanting to sleep, and I thought maybe a PET would show brain mets.  I was not thinking lung, and I still am not.

But just now, I got the call for the appointment and it is for a chest CT.  With contrast.

This makes maybe my 50th scan and that is not an exaggeration, nor an exact count.  It could even be more considering all the surgeries, radiation, etc, that I've had them for.

I am just not sure I can do another one.  I just ..... can't. They aren't scary or hurtful and they don't make me nervous or anything.  But I'm tired of this.  I'm sick of being in machines.  I'm sick of having to dress, get in the car, go wait in a waiting room, change, get on a machine, little poke, take a breath, hold it, breathe out, okay, here comes the contrast you might feel warmth down there, breathe in hold it breathe out, okay you are done, drink lots of water and no caffeine, get dressed, drive back home........how many times is one woman expected to do this?

Maybe cancer has moved into my lungs.  Or brain.  Maybe I just had some virus.  I'm getting up again, still tired but not sleeping all day.  Maybe it was just a "thing."  Maybe, imaginatively, my body is practicing to die, maybe, practically, the infusions are affecting me, maybe ....maybe.... I don't know.  But I do know that whatever it is, I cannot do one. more. test.  The doctor hasn't seen me.   I am tired of being doctored by machine.   I don't want to do this and I feel like a 3 year old stamping her feet.  I CAN'T DO THIS AGAIN!!!!!

I called and talked to my doctor's assistant, told her I was better and didn't feel like I wanted to do a CT, and said unless the doctor had a good reason for it, I was going to cancel my appointment.  She said she'd ask him and let me know.  She did, he said that he'd only ordered it in case the chest x-ray missed something, I know my body best, and so the CT is cancelled.

The lesson for me is:  DO NOT CALL MY DOCTOR if I feel sick but am not in danger of imminent death. My problem was sleeping, and it got translated into breathlessness, which is understandable because that's what they could hear, but then I was going down the wrong road.

Which barely matters, because all roads lead one place:  machines.   And, right now, I am so over CT machines.  So so over them....

Breathe Out........




Oh, and you are welcome insurance company, I just saved you $7,000.00.

Monday, November 11, 2013

Serious Fatigue

Right now, I walk a weird line.  Having written a blog that is based on humor, and now finding myself in a very unfunny place, what do I do?  Do I keep writing?  Do I wait until I can make what I'm experiencing amusing for my readers?  Do I hope for the best, or do I just let those of you who are now invested in my story know what life is like for me, even if it's dreary and complaining?

My plan from the beginning was to chronicle breast cancer in a non-threatening and amusing way, so that when others got it and did what I did - google for first-hand stories - they would find something not so scary. Because, early treatment really isn't scary and it isn't like the movies or TV with all that barfing and crying. All that seemed to be out there when I was diagnosed were blogs of people who died, or those of people who were still writing (and complaining) about cancer ten years past their treatment, making it seem like the worst thing that could happen (which for them it may be, but it wasn't for me and I imagine it isn't for everybody).  I felt like it would be a blip in my life and then over; I'd be annoyed at having one boob and that would be it.  I wanted others to know that people like me are out there -that we had cancer and let it go and that is okay, we don't have to run pink races or be activists or live a life defined by one bad experience.   Since I couldn't find a blog like that - I would write it.

As my treatment ended and I had my 3 month check-up post-therapy I had decided to say good-bye here and close up shop.  That post is half written, lying around on my computer somewhere.

Because of course, I never finished it due to the discovery of mets to my liver.  I now would not be one for whom life would go on, spent with occasional annoyance at my boob-less state but mostly just enjoying my family and career.  Instead, I would have cancer material for the rest of my very short life. Cancer could never be the temporary, nerve-wracking yet interesting life experience that I had thought it would be. It was going to kill me.

Damn.

And, while I could still have some laughs along the way, it was going to get grim.  I mean, death isn't always funny if you aren't slipping on a banana peel.  But I decided to write about it up to the end, or as close to the end as I could get.  Every story needs an ending and while we know mine, we don't know the details.  So I decided to continue along as far as I could get.

And so here I am, not close to death, I don't think,  but also in a very unfunny place right now.  Not as unfunny as c-diff, which is probably the un-funniest experience of my life, but my life right now is pretty miserable.

Where I am and what I'm doing is sleeping.

All the time.

18 hours a day, at least.  I sleep like my cat, who is in kitty heaven having me in bed continually.  I sleep so much  I am only hoping I can finish typing this before I go back to bed.

Now, if you follow me on facebook, you may have seen posts or likes, but they don't give much of an indication of what I'm really doing, all of the time.  Which is lying in bed, and not only lying but also sleeping. I wake up, have to pee, which wears me out so much I need another six hours.  I wake up, walk into the living room to see who is around, which is so exhausting I need to go back and sleep for two more.  Because family is important, and food is important, I do get up and eat, and stay up after that.  My body somehow adjusts itself to stay awake a few hours at night.  But that's all.

Just a month or so ago I had energy.  I was creating pendants (don't buy one) and was excited about life and starting a little business that could help my son with minor college expenses (very minor, like a Starbucks Mocha, but still...). I knew I was sick, and felt sick compared to when I was healthy - but life was okay.   I enjoyed getting up and making the jewelry and picking my son up from school.  I was happy sitting by my computer, watching my hummingbirds feed from a feeder I bought, from nectar I made, and while my life was restricted, those little things were joyful.  I wasn't able to cook dinner for my family - standing for an hour or more was hard and I have zero appetite and believe it or not, when nothing sounds good you don't want to cook.  So, my husband has taken that job over - but I could make myself a bagel in the morning. I read the paper, as I have since I was six. I pick my son up from school.  I went with a friend to a show.

A month ago, I felt like I was getting better and that I'd soon be able to grocery shop again, cook again, live a normal life again.  The cancer was stable, I'd radiated it, I had time, I thought.  It was getting easier to walk, to stand, to breathe.   I told my husband that I thought he'd get a break, that I'd feel good enough to do chores and be normal soon.  One day, I even cleaned the entire living room - dusted, vacuumed, wiped the leather chair, stuff I hadn't done in a year.    I invited people for the holidays, made gifts, thought ahead.  Life was small but okay and I felt like it was going to get better.  I knew it wasn't forever, but I thought I might have some time before cancer grew back and I became ill again.

Then about two weeks ago, I crashed.  I got out of bed at about 10:30 and still felt exhausted, my legs like rubber.  I drank half a cup of coffee, skimmed the paper, and decided to go back to bed. It was just too early.   I slept until 1:30 and got up, checked on the dogs, sat in the dining room where the sunlight and computer is, and then 30 minutes later, went back to bed and slept some more. I slept until 4:30 or 5:00.  I woke up long enough to eat dinner with my family, check facebook, and then nap until  8:30 pm.  My husband woke me to watch TV, and I stayed awake the longest period of that day - until 11:00.  Then I went right back to sleep.  I'd been awake maybe 6 hours that day.

Okay, so this has happened before.  I know what this is, (although not why) and I call it my "downer day."   Tomorrow, I thought,  I'll be tired but better, and the next day I'll be a little weaker but be fine,  and the day after I'll be normal.  For me, anyway.

But that hasn't happened. I'm still sleeping all day.  At first, I thought I was getting a cold, like my son had, but that isn't the case.   I am just completely and utterly fatigued, even when awake, which is just brief periods a day.  During those minutes, I might look at facebook or check my email but it's not long until my eyes start to close.    My legs shake as I walk; they feel like jello and I am terribly achy and weak.  Getting dressed seems difficult to the point of impossible, and I spend the day in PJs, carrying a blanket around like a ghost because I'm cold.  I can't shower as I can't stand on these spaghetti legs, so I take a bath, but not daily.  It's too much effort to fill the tub, get the temperature right, and I'm afraid I'll fall asleep in the middle and flood my house.  I can't come up with words, talking is difficult, and even typing - I make many mistakes.  This post has been days in the writing.

My doctor had prescribed me ritalin for fatigue.  That was for normal "cancer" fatigue - and the drug worked fine for that.  I'd take one occassionally when I'd start to feel sleepy in the afternoon and had something to do, and I'd wake up enough to do whatever it was.   Now I take two and sleep for four more hours.  I'm not even taking pain medicine right now, I'm too tired, too often sleeping.  I should be going through withdrawal, yes?  I've been on pain meds for three years.   If so, I'm just sleeping through it.   This is fatigue unlike any I have ever experienced and it's now lasted two weeks.  I've slept for two weeks pretty much straight.   It's time to confess. Because, what if I don't recover?  What if this is it?  What if my life is like this now and won't get any better?

It's not funny.  I'm pissed.  I have things to do.  The holidays are coming.  A grandbaby is coming. I have accepted, quite gracefully I might add, that my life is going to be cut short.  But I wasn't planning to sleep what's left of it away.  I figured I'd get sick, the cancer would grow, overwhelm my body, I'd have hospice in, and then turn up the morphine.  Bye.  There was nothing in any book I read that said I had to sleep 18 hour days for weeks first.

Supposedly, the cancer in my body is quiet so I don't know why this is happening.  I suppose it could be a form of anemia.  My red cell count is about 11 which is good for me, normal is about 12.  My doctor does a transfusion when I get down to 8.   But maybe there is a form I don't know about, or maybe something else is going on in my blood.  I don't see him until December, however and even then, what if nothing unusual shows up?   And I'm still like this?

Fatigue is common in cancer patients, I read, due to treatments, cell death, etc.  But I have been doing this for four years, there is nothing new. I've been fatigued.  This  is a whole new level of weakness and fatigue and I'm nervous that it won't improve.

When they say cancer is like riding a rollercoaster, they aren't kidding.  At the end of July, still on Gemzar,  I was able to drive to Carson City to see my sick father (and get a speeding ticket) and, while very tired, arrange for his care.  In early August, I had gamma knife type radiation and fatigue was one of the side effects, but it was nothing like this.  By September and October, off Gemzar, I was feeling so good I was planning for spring, imagining college trips, my son's graduation, little doubt that I'd be there. I'd bought myself enough time with the radiation and perjeta, I figured.   Now, I can't get to my front door.  Now, I can't even stay awake. I can't remember what I've done or said I'd do, and confusion reigns.

All I know is my bed is there with me and my cat in it.   My confused husband every once in a while peeks in, to see if I'm breathing, and then leaves.

I just hope this rollercoaster goes on the upswing again.  Because, I'd be really mad if I wasn't so damn exhausted.

Now I'm going back to sleep.




If you paid for a pendant and want your money back, I'm happy to refund you, just email me.  A few are made but haven't been shipped because I got confused so I will do that ASAP.   I still have a folder of orders that I am hoping I can complete as I enjoy doing them very much.  I keep hoping that I will will get back to normal.  Maybe tomorrow I'll wake up and stay awake.  But I don't know that I will, it's starting to make me very, very nervous that I might have to sleep until the sleep is permanent.








Thursday, October 24, 2013

2013's Most Disgusting Pink Fundraiser



The worst part about October is that I am always having to defend myself.  "No really," I insist. "I do have a sense of humor."  Or, "No, I'm not a radical feminist; I'm not a feminist at all."  Worse, "Yes, of course I want a cure for cancer."

It seems when you disagree with the concept of the pink ribbon being used to sell product under the guise of supporting breast cancer patients, you are labeled as one who doesn't support "the cause."   But when the items in question are pink vibrators or breast-focused pornography and you object, than not only are you pro-breast cancer, but you are also an old-fashioned, unfunny prude who is pro-breast cancer.    You are a veritable Jane Hathaway of a human being, humorless, sexless, and clueless.

The fact that you, indeed, have cancer yourself, even that you are going to die from it, doesn't seem to change opinions.

They get it, and you don't.

For those of you who land on this page by some search term I can only imagine, all the defense I'm going to give myself  is to remind you that reading more than one page of this blog will tell you whether I have a sense of humor or not.  It's pretty simple to do, and I bet you don't have to read too much to figure that out.  But if you don't want to take the time, just trust me:  I'm hi-fricking-larious.

Just not usually in October.

Every year, I highlight one group or person for worst Pinktober fundraiser of the year.   2013 was the tightest race ever, with the Ironman guy and his breast size-related donation levels;  the sale of the Pink Vibrators for Komen; the "set the TaTa's free" day (encouraging women to go braless for the cure - on Metastatic Cancer Awareness Day no less), and the video in which women walked around laying their breasts on counters while clueless people stared in wonder, to raise "awareness".  (One would presume that's all they meant to raise.)

But the winner became very clear as soon as I saw this and I don't believe I need to wait until the end of the month to make my announcement.   Motorboating for Breast Cancer

video

If you can't see the video above, try this link.

Last year, my choice was PornHub's Donation to Komen.  That was bad, but they are pornographers and how much can we expect?  Sure, they wanted in on the action, who doesn't?   They are not in the business of caring, and while I do believe pornography exploits women and harms relationships, the women involved in making it have had time to consider what they are doing.  Those who create it - we always knew they were trying to sell product and point attention to certain videos and weren't really about helping cancer, right?   The most disgusting part was that Komen took the money, and while they did eventually change their minds - it was eventually, weeks,  and took many, many emails from outraged supporters. They didn't have the moral compass to do it on their own, and they still don't.

This year, the motorboating "campaign" not only supposes to help cancer patients, but also exploits healthy young women.  The above "men" (and no, I cannot say that word without quotation marks as there is not a chance on earth real men would do this) are putting these young women in a no-win situation.  Do they help the cause of breast cancer by allowing themselves to be sexually used, or do they say no and risk the possibility of looking foolish?

"Miss Hathaway, these women were adults and knew what they were doing."

Ask yourself this: do you think any of those women would have said yes to being motorboated without the lure of a charity donation?  Did they have time to do any research or find out what was really going on?  A group of men walked up to them on the beach or in front of a club, a camera was pointed in their direction,  and the question was asked.  Did they know how it would be used or how they would appear?  How much time were they given, what kind of pressure was there, what would happen if they said no?

"Do you want to save women with cancer? All you have to do is let me motorboat you for a couple seconds. and we'll give $20.00 for cancer research," the boys ask, seemingly to only beautiful girls, a camera pointing straight at them,   "Well....sure" these women say, because you know, who doesn't want to help cancer and how does somebody say no and risk looking insensitive with a camera focused on her?     I'm sure some of our more confident sisters did turn them down,  despite the knowledge that they were being filmed and their refusal could also be used online to make them look like, erm, well, Jane Hathaway.   But truthfully, most of us aren't that confident early on in our lives, we tend to be trusting, and I can imagine being young, confused, and having said yes to this request myself, because I would want to help cancer.  Mostly, I might have said yes because it was easier than what I imagined the consequences of saying no would be in today's video age.

As these boys put their hands on the sides of these women's breasts and push their faces in to their cleavage and make "raspberry" noises, as children are wont to do, you can see the conflict on the faces of the women.  Their body language also tells a story.  They almost universally back up.  Many scrunch their faces in disgust or they look at the camera as if hoping for approval. A few frown.  Many giggle at the tickling but their hands tell a different story - they reach up to push the boys off as they step back, or they keep their hands up, fists closed, protectively holding their shirts as if they could close them.  Many turn away and one even takes a pull on a flask. Only one or two seem to really not mind, throwing their head backs in abandon - a stark contrast to the majority who seem universally uncomfortable.

The difference in  motivation is highlighted when the boys make jokes about the size of the women's breasts. "That wasn't a motorboat, it was a yacht!" said to raucous laughter, while a women sighs in resignation,  "Well, that was my good deed for the day."

"Oh but Miss Hathaway, they raised $7,000 for charity!  And, the charity refused the money.  It's women like you who is going to cause cancer to continue."

I must congratulate the Breast Cancer Research Foundation for refusing the money, and they did it before there was any major outcry, or certainly, before I'd heard of it - but really, their refusal is no surprise.  Like these women, they were put in a no-win spot.  Take money that trivializes disease and makes it about boobs, or refuse research funding.  Really, there was no choice.  They simply stated that the way this money was collected was not in line with their ideals, which by the way, it is not.  There is no chance that they ever would have accepted money gained in this manner, and anybody who has paid even the slightest amount of attention to breast cancer charities and how they operate would know that.

Of course, these online marketeers/motorboaters (they had a promo company help them with the video, by the way) had no clue about this, did they?  They feign surprised that their money would be refused, yet it's almost like they KNEW the money would be refused, and that publicity would surround them based on that.

Why, how DARE a breast cancer charity not take money from people who demean and sexualize women or which trivialize the disease.  Why not take their money from guys who collected it by sticking their faces in women's cleavage.  Hey, lament the guys, we were just trying to help.   The boy's statement about the refusal was both whining and designed to turn up the heat.
"It's obvious that they had to do this because they were getting pressured by a small minority of haters who thought that this video was 'offensive.    So congratulations, haters. Breast cancer research literally just lost $7,000 because of your personal problems with this video." 

So it is we "haters" who are causing breast cancer deaths to continue in spite of the heroic efforts of these boys.  Never mind that the "haters" are pretty much all breast cancer patients themselves, ones who are sick of watching our fatal disease be turned into a sexualized, trivialized, pink boob-fest every October.  Never mind that I, a hater, am dying of this disease and wants a cure more than they can imagine.  Never mind that $7,000 is a drop in the bucket compared to the multi-millions collected in October.  We haters, we Miss Hathaways, we pulled those white horses right out from under those boys' butts and single-handedly set breast cancer research back decades.

How dare we.

It's possible, of course, these boys got exactly what they wanted.  They did a video that went viral, they got to sexually harass women in the process,  but because it's for "cancer,"  anybody who objects gets to be called a prude, making themselves in the right.  They picked a charity that couldn't take the money in good conscience in order to create a fake controversy, which of course, causes the video to continue to be played. Now they are making all sorts of money on this and other videos on their channel with no obligation to give any of it away since the cancer charity they picked - suspecting it would refuse - refused.  They are the underdogs, the helpful heroes, now insulted, refused, rejected.

Dude.  Score.

I've said it before and I'll say it again:  Males finding young, hot girls and "motorboating" them, or guys jerking off to boob porn, women laying their boobs on tables, shirts that say, "Save Second Base" all purportedly For The Cause - it all minimizes and trivializes a disease that we, your sisters, moms, wives and hey sometimes your brothers, suffer from tremendously.  And die from.    

Why are other cancers not trivialized this way?  You don't see Get Some Pussy for Cervical Cancer Research, or Rim Shots for Colon Cancer or  Make-out for Myeloma,  Teabagging for Testicles.   Why not?  Is that beyond the bounds of good taste, but this is not?  Could it be that people understand that folks actually suffer and die from those cancers?  And too much awareness has left breast cancer not about death and disease - but {giggle} boobs?

You know the most common thing people say to me?  "At least you have the kind of cancer people don't die from anymore."  That's what all these pink jokes do, these facebook games, and slogans like "save the tatas."  People have forgotten there is a real disease behind the pretty ribbon, one that doesn't only take breasts, which is mostly only important to the boys in that video.  What is really important is that it takes lives.  It could kill your wife, your mother, your little sister - it will kill me.  Breast Cancer has become a joke, a way for somebody to get themselves noticed in October, to sell their product or get their video to go viral - to get their piece of the pink pie.  Just slap a  pink ribbon on it, promise a little to charity and hey, you can get rich. And, if it hurts the feelings of a dying Jane Hathaway, well, who cares?  She clearly doesn't get it.  How can she?  She spends too much time in the hospital to know what's going on in the real world.

We see through you, you immature boys.  You use the pain and suffering of women, real women, like me, to get your heads where you wanted them and your pockets filled, and when we object, you call us names, because you are the heroes, not us.    I hope you enjoy whatever fame you have received and whatever momentary excitement you got from making this video.  I know you are not worried about the tens of thousands of cancer victims whose pain and suffering you have trivialized, I know you don't even understand that.  I hope sincerely that it never becomes real to you - that it is not someday your wife, or your mom, or your sister who is eventually in my place, planning her funeral, hoping against hope to live to see her child go to college, living with the knowledge that the end is near.   I hope you don't have to watch somebody you love die a slow and painful death, while everybody in society around you uses the symbols of their suffering and disease as a way to make a buck.

I hope that you never have to become men.


Peace,

Miss Hathaway.




Sunday, October 20, 2013

Reddit - AMA

I've decided to do an AMA at Reddit.  This will not only give people a chance to talk to me about what it's like to live with end-stage cancer, but it will also give me insight into what other people are interested in, and may help direct this blog some.  Might also be a chance for me to educate folks on pink.

Because Reddit wants proof that you are who you say you are, this blog post will be that proof.

Here is the link:  http://redd.it/1ov8li

Ask me anything!  :)




Thursday, October 17, 2013

Mondays At Racine

I posted this on my facebook page  but I thought I'd mention it here because it is so good.  I highly suggest that those of you with HBO record (or, hey, even watch live!) the documentary Mondays at Racine.

It is about a salon run by sisters,  Rachel Demolfetto and Cynthia Sensone, whose mother struggled with breast cancer.  They decided that one Monday a month, they would open their salon to cancer patients and give them free services, from pedicures to head shaving.   While the documentary starts with the sisters, the story really focuses on two cancer patients, Cambria, a young mother just diagnosed with Stage 3 cancer, and Linda, 58, a woman who astonishingly, has survived 17 years with metastatic breast cancer.

It's hard to write this review without spoilers, but let me say that watching Cambria's story took me straight back to the early days of my cancer diagnosis, when my son was young and all was unknown.  But Linda's story is the one that stays with me - 17 years of treatment seems unimaginable to me.  She admitted that she had done 15 chemos by filming - that is 8 more than I've done.  While my goal has never been 17 years, it is always in the back of my mind that some women are statistical outliers and somebody has to be one - maybe it could be me.  But, after seeing her difficulty, I couldn't help but think that some things might be more difficult than death - I'm not sure I could manage this for 17 years - life with this pain, this exhaustion, and with what it does to your family.

Back to the salon:  the women are made to feel beautiful and more importantly - normal -  and they find comfort in a place that caters just to them. They go back to hold the hands of tearful newbies who are having their heads shaved for the first time, Cambria now experienced and with her short, chemo-curly do.

The story ends on a realistic note, as a documentary will do.  I do not think there is a breast cancer patient in the world who won't relate to what these women go through, and also who won't feel grateful for the sisters who provide such a  calming refuge in such a frightening storm.

Mondays at Racine is on HBO, which means you can still catch it:  the 18th, the 20th, 21st and 26th and also on HBO 2 on the 19th and 24th.

When you watch it, let me know what you thought.   Don't read the comments if you don't want spoilers!


_____
Also, I wanted to add that based on a couple of comments, the show, and my own experience, hairstylists seem to be special people.  My own stylist, Cynthia, did my buzz cut when I was going bald at no charge. She made it as easy on me as it could be, styled my many wigs, also at no charge and didn't laugh at me when I pulled them out.  (I originally bought a bunch of cheap ones in many styles and colors, not understanding what wearing them would entail.)   I've practically have to beg her to charge me since my diagnosis. Feel free to check the link out, like her on facebook (she shows photos of her styles and somewhere I'm on there - on of the few times I look good)  and go see her if you are in Sacramento.  She deserves all the accolades she can get.   Tell her I sent you, she does a wonderful job.


Sunday, October 13, 2013

Pinktober from a Metastatic Point of View

Today is October 13th, which, as you know, is officially National Breast Cancer Metastatic Awareness Day. What do we Metsters (people with metastatic breast cancer) want you Healthsters (people without metastatic breast cancer) to know about our disease?

First, know that it really is an official day!  There is a formal Senate Resolution declaring it as such, full of "whereas and resolved" and all that legalistic jazz (which would be a great name for a band, by the way).

Where did this resolution come from and who decided on the date?  Why did they choose October 13th, which seems so random,  rather than, say,  October 27th,  which happens to be the birthday of one of my kids?  Actually, I guess I'm glad it's not the 27th as I'd hate to have to choose which day to celebrate.

"I'm sorry honey, but we are going to have to put your birthday off this year - it's NBCMAD, and I have plans to par-TAY.   Dad and I are going to the club to listen to Legalistic Jazz."

I don't know the answer to how this day came into being or why women with early stage cancer get a whole month and a special color and everything, and we, the Chosen Ones,  only get one day.  I do kind of get why the month of October was selected, with the scent of awareness in the air, but it seems kind of forced, don't you think?  I mean, October has been the pink month for decades and October 13th has been Metastatic Awareness Day since only 2009 (the year I was diagnosed with cancer, now that I think about it). Quite the discrepancy.

I'm sure, before Congress was brought in to do the very important work of making this day official, the conversation went something like this,

"Hey, what do you think of including the people who are actually going to die of breast cancer in our Pinktober celebration?"

 "Won't that be too depressing?  Dying chicks don't sell a lot of product."

 "Well, they aren't around for that long."

"How about if we just give them one day?"

Personally,  I would have selected a better month, like April, which is full of hope and promise rather than October, which is full of death and decay.  And October the 13th?  Why?   Did a Friday the 13th roll around, and somebody across the street from the Komen offices (because we know the actual Komen people don't care about metsters) decide to get ready for Halloween and while they were searching eBay for the perfect costume  - one with amputated body parts and glowing bones - suddenly make the death/cancer connection and think, hey! It's Friday the 13th!  This would be the perfect date to let people know about Advanced Breast Cancer?

One wonders why they didn't just choose Halloween, with its built-in focus on death.  I mean, really, is there a better day out there to represent us metsters?  None of us get out of this metastatic cancer thing alive, and honestly, if you saw my mid-section, you would know I need no costume, with the winding scars from numerous surgeries, the puckering muscles, the weird reconstruction, bones sticking out everywhere, topped with grey, scarecrow hair.  I'm the perfect representative for a Halloween Metastatic Awareness Day.

But then, I guess if it fell on an already established holiday, we metsters would not get our rightful attention.

Which, as it happens, we don't, anywhere in the world of breast cancer, from support groups to charitable endeavors.

And, I guess, this begins what we want you to know about Metastatic Cancer:

We are the Ugly Stepchildren of Cancer
While early stage girls are dressing in pink outfits, putting their hair up and going to parties where they get crowned "Survivors," those of us with metastatic disease (aka the Losers)  are left inside, sweeping the stone floors while gulping our Dilaudid, knowing the only Prince who will rescue us is the Prince of Darkness.

We have such different concerns than the early-stagers that it might as well be another disease. Early stage women are nervous about: mastectomies, how their reconstructions will look, missing work, what chemo/radiation will be like, and the biggie, will cancer come back  - all of that is valid, and I was nervous about it all too -  but it has zero to do with those of us who have had a metastatic relapse.

We are, frankly,  beyond those concerns.  What your breasts look like when you are hoping to live to see your child's next birthday - not on the radar.  When you are on your 8th chemo, you know what it's like. We aren't afraid that cancer will metastasize, we are afraid we won't know the right time to call hospice.   We are concerned with death planning, disability and insurance, how our children will grieve and how we can help them ahead of time. Some of us are hoping to find somebody for our husbands to remarry - I mean, she has to be nice to our kids and very sweet, but not too cute, if you know what I mean.

We wonder:  do we write letters or make videos for the kids or will that upset them?  How much funeral planning do we do and how much do we let our families do?  Will treatment cost too much and leave them destitute?   Will I know when to give up?  How much pain am I supposed to take before I ask for more meds, and if I take too much now will it render it ineffective during end days when I really need it? Should I buy that perfect Christmas present in August, knowing I might not be there to give it away?

We cancel all our magazine subscriptions, we write our passwords and hide them away for our husbands, we throw away that childhood diary we don't want anybody to read, we go through our treasures and mark them with what they are and who they should go to and why.  We slowly give things away so our family doesn't have too much junk to go through, and we never, ever, take advantage of out-of-season sales.  Why buy summer outfits, even at a deep discount, when it is October?  There is a strong likelihood we won't be there to wear it in July.

We are mourning our lives while living them, existing in the shadow between life and death, all the while wondering how long until the final chemo stops working.

Our experience is different than that of an early stage woman, and you may not be aware that there are very few support groups across the country for those with end-stage cancer - believe it or not,  there is no help for us in facing our own deaths.   Early Stage women have a support group in every city in the country; they have navigators and special camisoles and brochures to guide their way, and books! Hundreds of books about early stage cancer.

Metastatic women?  Almost nothing.  I believe there are fewer than ten support groups for advanced cancer listed in the US.   Despite our differing needs, we are lumped in with all breast cancer groups, and worse, we have, in droves, been turned away from early stage groups, pulled aside and whispered to by coordinators, saying "you will frighten the early stage women."  There are very few books for metastatic women as compared to the hundreds for early stage.   Even online support groups end up with women fighting about whether early stage women should be allowed to post in the Stage IV sections.  Many argue that they should be allowed there because they could have metastatic cancer any time, as if that means they understood what it is like now.  There seems to be little available for our emotional needs.

We don't fit in with our "pink sisters."  Our concerns are very different, yet we are expected to be just like them, after all, it's breast cancer.   Alone, we are left to deal with real issues of life and death.

You Can't Tell by Looking
There are a wide range of women with metastatic disease. Some have a low volume of bone mets and are still doing easier hormonal treatments.  They work, they look healthy, and you might never know they have advanced cancer.  They might look normal, but I assure you, they don't feel normal, and it only takes one scan to put them in a different category of functionality.  One where I am now - a person who is doing well but is somewhat disabled (which is still hard for me to imagine).  I have done seven different chemos and had many abdominal surgeries and had a life-threatening illness from which I'm not sure I'll ever recover entirely.   I can't work although I'd love to.  I am in pain, sometimes quite a bit,  and I have to limit myself, but if you saw me in line at Spirit Halloween buying a Grim Reaper costume, you might think I look a bit thin (and be super jealous, of course) but you wouldn't assume I was buying a costume of my twin.

Then there are women who are really struggling - they are on oxygen or in wheelchairs.   No matter how much cancer shows physically, all of us are dealing with end-stage cancer, and conditions can change quickly.  I've seen women in wheelchairs live four years, sometimes get up and walk again.  I've also seen women die 3 months post-skydiving trip.  You can't tell. This disease can turn on a dime.  If you know somebody with whom you need to make peace, do it now rather than later.  Later may not come, even if your friend looks fine.

Chemo Is Not Harder if You are Bald
Oddly enough, people think that if you are on chemo you will be bald.  Not all chemos make you lose your hair.  The chemos that they give for early stage breast cancer as a preventative treatment do cause hair loss but most of the ones for advanced cancer do not.  Know this:  how hard a chemo is on you has nothing to do with your follicular status.   I have felt a lot worse on chemos that left me with a full, lush head of hair than on chemos that left me looking like Crazy Britney.   If you hear we are doing chemo, you should pity us and bring us presents, even if our hair is shoulder length.  Actually, you should pity us more, because we have to do chemo AND shave our legs.   Assume nothing by what's on the head.

Treatment Never Ends
We want you to be aware that when you have Metastatic Breast Cancer, treatment never ends.  People often say to us, "Oh, how long are you going to do chemo? like the answer will be four or six rounds as it is with early stage.  The answer is we don't know.  We will do it until our cancer cells morph and mutate and learn to not die in its presence,  and then we'll switch to another drug.  I have done 7 chemos.  I have had half my liver cut out.  I have had microwave ablation and then gamma knife radiation.  I have done 3 targeted therapies.  As soon as one thing stops working, I start something else.  Cancer wants to live, it evolves like a cockroach in the face of a pesticide -  it learns to survive.  Eventually, there will be nothing left and that is when, I hope, I will be strong enough to call hospice.   So don't ask a metster how long they will be on treatment, or when they'll be done.  The answer is "never."  They will never be done. When they stop, they die.

Awareness is Not for Us
Awareness has never helped a single cancer patient, metastatic or not, but it is especially annoying for those of us who are losing the "battle" with cancer.  If you see the word awareness in a charity description, on packaging or on a flyer somewhere it's code for "we use our money in ways that won't help anybody who is actually sick or dying."

We want you to know that we need your money donated to charities that focus on RESEARCH.  Say that with me boys and girls:  R.E.S.E.A.R.C.H.  Here is some awareness for you - only about 5% of all monies donated to breast cancer charities end up helping metastatic women.

And, of course, you are aware that only metastatic women die of cancer, right?

Put those things together and you realize nobody is trying to save us.

We selfishly want charitable money to go to smart scientists in labs who can come up with a way to stop those cancer cells from dividing.   The good news is if they can figure that out, they can save early stage women too. They can save women who do not have cancer.  But they need money.

In the meantime, we are also okay with money going towards scholarships for our kids (most of us with end-stage cancer have had to give up our jobs) or direct patient services (such as rides, food, housecleaning and repairs, help with copays, a place to stay for our families if we have surgeries in other cities, etc).  My husband and I both worked and set ourselves up in such a way so we could live on his salary - all of mine was going to fund my son's college education.   And,I had to quit my job, thanks to cancer. Not to brag, but despite it all, my son has a 4.68 GPA in a difficult program and participates in many extracurriculars (which my husband has to drive him to).   A scholarship acknowledging how hard this experience must have been for him and how successful he's been in spite of it would be nice, but there are surprisingly few.

Pink Ribbon Tattoos?
Maybe I'm alone, but I find pink ribbon tattoos very puzzling. Granted, not all women hate the pink ribbon, not even all metastatic women (although all I know). Jewelry is one thing.  But some women tattoo the pink ribbon right on themselves, which confuses me.   I wonder - what if the woman was metastatic, if she understood that she would die of this cancer - would she still want that symbol on her permanently?  What if she wasn't metastatic and then down the road, became so, like 20% of women do?

If one lovely spring morning you were walking down the street, and roaring up behind you came a Peterbilt truck which slammed into you, squishing you flat as a bug, leaving your family behind, your children motherless, your husband without a wife, your workplace without their employee - and if you somehow caught a glimpse of this future - would you go out and tattoo a big Peterbilt logo on your ankle?  Or if, say, it squished your husband, would you memorialize him by inking a truck on you?

Maybe some would.  Hey, it takes all kinds.  But that's what a pink ribbon tattoo looks like to me, a metastatic women.  It's a symbol of the disease that's going to kill me.  And, it doesn't deserve a place of honor on my skin, where I have to look at it every day.  Not that you could see it what with all the wrinkles and scars and such, but you know what I mean.

"I almost died."
I love the TV show Parenthood, and one of the main characters just went through breast cancer last season. Already her hair is longer than mine is and last time I was completely bald was 3 years ago - ah the magic of Hollywood.  Anyway, Christina is doing what I suggest people do who have had cancer - live life fully, take advantage of this one chance you have, fully embrace it, don't look back.  So, she is running for mayor of her town.  You go, Christina!  Where's the ballot, I should be allowed to vote in TV town.   At one point in the show though, she was having an emotional moment with her husband, who is not as fond of her idea of being mayor as she is.  She started blubbering about her cancer and she said, "I almost died." and he agreed with her, "Yes, you did.  You did almost die."

And I'm sitting here thinking, "she did?"  When did she almost die?  Did I miss something?   She was Stage II, she did chemo, she had a lumpectomy, her doctor said throughout she'd do well, and now she's fine. Sure, it could come back, it can always come back....but it probably won't.  So, how did she almost die?  I never thought I was near death when I had early stage cancer, so what happened to her?  Was it off camera?  Did she have c-diff and go septic and her blood pressure crash and she was minutes away from death?  Why didn't they show that then?

TV People:  Having early stage cancer is not synonymous with "almost dying."

That statement is like the women I mentioned above who protested us metsters having space to talk alone about our specific concerns,  whose excuse is, "I'm not Stage IV yet" as if that puts them on the same level. They may have a 20% chance of becoming Stage IV, and I'm the last person to say it can never happen. But if they are still fine, if the odds are still good - why live with that "yet" hanging above a head like the sword of Damocles?

If you tend to do that, you can leave it off, you know, and just say, "I'm not Stage IV." Do that and give yourself that gift.

Speaking as a person who actually has a fatal form of the disease, who will die from it, it makes me ineffably sad hear the "almost diers." It's like every time you get out of your car after driving home from the freeway and saying, "Whew, I almost died."  Sure, you could have gotten into a crash that killed you, because you are in a thousand pound vehicle on a fast road with goodness knows who else - but you are still here.  Don't take that away from yourself.

Having early stage cancer makes you think of your mortality; you may be fearful that it will metastasize, but fear and worry is not the same as living it.  Christina, you didn't almost die.   You had a disease and were treated for it.  You were never close to dying.  Your friend there, the one who is Stage IV and is still going to chemo, the one who is still getting infusions and whom you say hi to each time you go in for your three month checkups?  The one who encouraged you to run for mayor?   SHE is dying, not you.

Thank goodness.

You might wonder why we need a Metastatic Awareness Day.  And, the truth is, we wouldn't if we didn't have the pinkness of the rest of the month bearing down on us.   However, years of ribbons and fun runs and soup cans and pink vacuum cleaners, and  inspiring phrases such as "save the tatas" or "save second base" or people who proclaim their near death experience when they were not near death have trivialized metastatic breast cancer to the point that one of the most common phrases people say to us when diagnosed is, "Well, at least nobody dies of breast cancer anymore."   And, that is even after we tell them we have mets.

So today, on MAD, I think you should know:

Metastatic cancer is not curable.  People die of it.  And I am going to be one of them.