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.

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!  

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.

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! 

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

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.

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!