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Thursday, December 30, 2010

New Year's Resolution

I have already hinted at my resolution for the year 2011: I plan to take the entire month of January off from being a cancer patient and just live like a normal person. No doctors, no appointments, no tests, nothing medical. After 70 appointments in 16 grueling months involving pokes, prods, chemicals, scans, treatments, sticks, pain, mutilation, radiation, x-rays - after being questioned, examined, sliced, pulled, poisoned, sickened and finally healed - I want to start the year fresh, and out of the medical world.

So far, in 2011, I have only 8 visits to my oncologist scheduled, one surgery left, and a mammogram. With proper planning, I might only have to enter a medical office every other month, which as you can imagine, is a great relief after the past years of sitting in hard chairs several times a week listening to Joy Behar scream on some CRT TV.

Thus, my New Year's Resolution: No medical appointments in January.

Be careful what you wish for.

It would seem that I have not quite recovered from my last surgery November 18th. Oh, the boob looks good, in clothes at least. (Gentlemen, don't look down my blouse or you are going to get a shock.) But, once the surgical pain wore off, once the swelling went down, I was left with a reluctant shoulder - one that refuses to do what I tell it to, just like my greyhound when he spies a squirrel.


No squirrels were harmed in the taking of this photo



Fly like Superman? (Okay, realistically, reach for a coffee cup?) Nope, only one arm goes up - my mastectomy side won't cooperate. Reach around to snap a real bra, (which I am very excited to put on again?) Well, not without a jangle of pain and some creaking and stiffness. Lift a carton of milk? Hah! Not a chance.

Good thing I don't like milk.

Something has gone awry. Not only does my shoulder feel like it's burning, I've lost range of motion in my right arm.

How did this happen? Why now, after a year of carting around that rock-hard expander under my skin?

In my imagination, on the surgical table after my last surgery, the doctor said, "Let's sit her up and see if they look even" and some nurse hauled my unconscious body up by the right arm, damaging my shoulder ligaments. In real life though, it may just be a complication related to breast cancer and reconstruction, and a not uncommon one at that.

The truth of the matter is, I don't care how it happened.

Now, the old Ann would have ignored this shoulder problem forever. Either it will go away or it won't. But, now I know that some things not only don't go away, but they can get worse and sometimes even kill you. Like, you know, breast cancer. So, after a month, I realized this stiffness and pain is here to stay, and while it's not life threatening, it might not get better on its own, and pretty soon I'll be doing nothing but chasing squirrels.

So, I called my doctor and I was given the choice: Physical therapy or a consult with an orthopedic surgeon.

Guess which one I picked?

Give yourself a point if you said Physical Therapy.

I know you doctors. I know what you like to do. First chance you get, you'll stick me in a machine. And, as much as I enjoy those MRIs and CAT scans and the little break they provide during a hectic day, I've been baked enough. Not to mention that anybody who has the title "orthopedic surgeon" is probably going to want to fulfill his destiny and cut something.

So, physical therapy it is.

My first appointment is January 11th.

I blew my New Year's Resolution before the year began.


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Friday, December 24, 2010

Merry Christmas - Contest!

Merry Christmas!



This date last year, I was 24 hours past my second chemo. My hair was falling like snow so I had just shaved it, and faced a bald Christmas and hairless winter months.

This season is a tough one to be bald, with parties and family visiting and events to attend. Starting the new year without a nice wig makes life a little harder for the cancer patient, as I well know. Going out in scarves is fine for every day, but a wig is often that nice little touch of normality during a difficult time.

Being bald last year and knowing what it's like, it is very special that I can offer a reader a gift as we enter the new year. I have the opportunity to offer a lucky reader a very nice, expensive, monofiliment wig of their own - for free! Start 2011 with a lovely, trendy, comfortable wig.

The wig is by Paula Young, and the model is a new one, called Elyse.

Here is a description: "The Elyse wig is a modern salon-quality cut, featuring longer, angled layers in the front and tapered at the sides and in back. Hand-tied, with a monofilament top, Elyse offers full coverage with a natural-looking part and styling flexibility. It even includes open ear tabs are perfect for eyeglass wearers."

I'm not bald anymore, but in putting it on, I found it very comfortable. I wish I'd had this wig when I had been bald.

Paula Young, the company, is a supporter of various breast cancer-related charities, so I can confidently say that this is an excellent product coming from a good company.

Here are some photos of me in the wig. I chose my own color and the winner will be able to choose their color too. You can find selections at the website here.


So, how do you win? Just make a comment: click on the button that says "Talk to me" and say something nice! You may comment anonymously, but in your comment, you must put identifying information so I know who you are. At midnight, January 1st, the contest is closed, and I will draw names out of a hat on the 2nd. The lucky winner will send me their address, I will pass it along to the Paula Young representative, and you'll have your new wig in a few days, just in time to start the new year.

Good luck and Merry Christmas!

Sunday, December 19, 2010

Sam Spratt, Illustrator

"Someday, if I ever get cancer and die, my kids are going to be upset that there are no photos of me."

As the family photographer, that was the argument I used to try and convince my husband to pick up a camera and include me in photos. He, possibly thinking I was being a tad over-dramatic about that cancer thing, rarely complied. Year after year, photo after photo, on family vacations, birthdays and Christmases, there are snapshots of him and the kids: opening presents, standing by a monument, or blowing out a candle. I am always implied (somebody had to have made that cake), but never in the shot.

Once, I even bought him a camera - an old vivitar one, supposed to be the easiest to use on the market, without all those fancy buttons and lightening bolts and things. Point and shoot, baby. I'm in.

It gathered dust in a closet before I eventually threw it away.

It probably didn't help my case any that on the one or two occasions where he did decide to take a photo of me, I squealed, "What are you thinking? My hair is a mess! I need lipstick on. Don't you DARE take a photo of me now!"

People are complicated. I want to be included but I always wanted to look my best.

I admire all the young kids who put these crazy, and sometimes unflattering, shots of themselves on facebook. No, not the ones where they are drunk, passed out and writing foul words on each other in Sharpie. But, the silly, zany ones which show their imperfect teeth and great senses of humor. They don't mind showing the world how they really appear, and I always have. The desire to appear perfect in a photo is a hard one to break, having been drummed into us repeatedly beginning with kindergarten school picture day and continuing on through your wedding - but today's kids break the rule routinely.

Well, my cancer threat came true, except for the dying part, of course. I've taken lots of photos of myself during this period, and if I had a less sensitive job, I might have posted more of them. I documented all the stages of my mastectomy and recon, and my baldness and hair regrowth, standing alone in front of a mirror with my iPhone. (If my phone ever gets stolen and they go through my album, that person is going to get a huge shock.) I am glad to say that cancer helped me get over the need to look perfect in pictures. When you are missing a body part, you have to give up the illusion of perfection. Still, I don't think I'll ever be comfortable with my image. I'm much prettier (and younger) inside my head then when I see myself in photos, I suppose. It's hard to reconcile the two images.

I was relaxing with my iPad one day, using Flipboard or Pulse, I forget which. both fabulous apps, by the way. I was browsing Gizmodo, one of my favorite tech sites, when I saw a contest by their new and extremely talented illustrator, Sam Spratt. You could win a portrait of you done by him for your facebook profile, and all you had to do is comment.

I don't enter a lot of contests - I already won the big prize, cancer, and figure you only get to beat the odds once. But, this contest intrigued me. I wanted to jump in the game, and leave my kids with an artistic memory of me, whether I die in five years or in fifty. How often do you get to be painted by somebody that talented?

Plus, I can comment like nobody's business. So, I did.

And, I won.

I couldn't have been more excited. Sam needed a high rez photo of me, in natural light, and fast. It has been raining for weeks here in sunny California and the natural light was the first hard part - my house is dark so it actually had to be done outside. I go to work in the dark and come home in the dark, so it had to be on a weekend. During a break in the rain, a week ago Saturday, I grabbed my youngest son off the computer and away from his homework, and told him to take some photos of me. I had it in my head I'd so something fun - having seen Sam's work I know it can be fanciful. But, frankly, I couldn't come up with anything and my impatient 13 year old wanted to get back to work. So, I just did a headshot and sent it to him.

A few days later (he works fast) my portrait was posted.


I love it more than I can say - this may be the first time my image was captured and I liked it. I love what he did with my hair and as it grows out, I know which direction to go. And, I think I'll be keeping it gray too. I think he made me a little more me, if you know what I mean? I have a very suburban middle-aged mom look, especially now, post-cancer. Yet inside I am anything but, and I think that snuck out in the illustration he did.

Plus, there is cleavage. You gotta love the cleavage.

So, Sam, if you ever read this, thank you again. It was an amazing thing to have, and I appreciate it. And, I still want to buy a high rez version so I can print it. I might actually put this one on a wall and be all vain and braggy about it.

Oh, and never doubt the power of Gizmodo. I work in a high school and I had kids coming up to me, asking if I was the person who was painted in the contest. Now I'm cool, too.


For more Sam, go here: Sam Spratt Illustrations

Friend him on facebook.

Follow him on Twitter.

His Gizmodo bio.

And, his tumblr blog.




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Tuesday, December 7, 2010

RIP Elizabeth Edwards

She was one classy woman, surrounded by ugliness, but always showing grace.

Her last public words bear repeating:

You all know that I have been sustained throughout my life by three saving graces -- my family, my friends, and a faith in the power of resilience and hope. These graces have carried me through difficult times and they have brought more joy to the good times than I ever could have imagined. The days of our lives, for all of us, are numbered. We know that. And yes, there are certainly times when we aren't able to muster as much strength and patience as we would like. It's called being human. But I have found that in the simple act of living with hope, and in the daily effort to have a positive impact in the world, the days I do have are made all the more meaningful and precious. And for that I am grateful. It isn't possible to put into words the love and gratitude I feel towards everyone who has and continues to support and inspire me every day. To you I simply say: you know.

RIP Elizaabeth


Oh, and by the way. Cancer sucks.



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Saturday, December 4, 2010

Post-Cancer Life



On December 2nd, 2009, I had my first chemo infusion.  Last Wednesday, December 1st, 2010, I finished my last infusion of herceptin.  I had a full year of IV sticks, infusion rooms and chemical treatment.  I saw the cycle of the seasons through the window in that room.

My chemo nurses and their assistants had taken such good care of me during this year - their calm and professional demeanor were exactly what I needed - yet on days when I felt ill or out of it, they had the meds and advice at the ready to help me through. 

Because of their outstanding care,  I left work a little earlier than normal and stopped at Whole Foods and bought a shopping bag full of assorted treats as a thank you for them and the office staff.  I was grinning from ear to ear as I went in, and Joe - the only nurse who thinks I have fat veins (which is a compliment, trust me)  - told me I looked like I was about to sing "The Wind Beneath My Wings."

Surely he doesn't think I'm that sappy?  Joe, I thought you knew me better than that - you've seen  my blood, which is deep purple, not pink and frothy.

The song I really wanted to sing was Five Steps by the Davenports.

veins swell
you know me well enough to tell
five steps you're over


What a long, strange year it has been.  I'd outlasted all the people I started with and was a stranger in the room again.   Sadly, as my time ends, somebody else's begins.  As I watched my bag drip to the end, I listened to the conversations of  the chemo newbies beside me.  Two women were on their second infusion and still had their hair.  They were talking about constipation and the various side effects they'd experienced from the first one.  I almost opened my mouth to give them some tips, but then I thought - let them figure it out on their own, and get through it together.  We all find our own way through this experience.  I had my time, this is theirs.

It was 5:00 when I said, "I'm dry" for the final time, was unhooked from the airline tubing and the rolling pole, and left the room full of barcaloungers rocking silently behind me. 

I now begin my post-cancer life.   I have been told, in darling little pamphlets and by other cancer survivors, that I will feel adrift.  Uncertain.  Uneasy without the protection of drugs dripping into my system, without a doctor examining me monthly.  I will begin to fear recurrence and worry that my safety net has been pulled out from under me.

To that I say, "Um no."

"HELL no."

I don't even understand that kind of feeling. I didn't keep track of every appointment, but according to what I did put in my iPhone, I had over 70 medical appointments in the time between when I was diagnosed 16 months ago and now.

Do people really feel upset that they don't have to go see a doctor four times a week?  They feel lost when they aren't being poked or prodded or stuck or infused or poisoned or burned or cut upon?  They miss it and feel unprotected? 

Really? 

I don't believe it.  I think it's made up by those pamphlet writers.  Once they write their "Getting Through Breast Cancer Treatment" pamphlet, they get their taste of fame and don't want it to end.  The writer has to scramble to come up with something else, so after a committee meeting, they come up with a "Post-Cancer Life" booklet and tell everybody they are going to freak out over not seeing doctors and having treatments every day. 

And, I guess some people buy into it, just like if you see an ice cream commercial thirty times you might start thinking maybe you want some ice cream, even if you aren't hungry.  Word spreads and now people are actually believing something is missing in their life because they are not burning gas to some medical office on a daily basis.

You know what my thought is? 

"I don't have one single appointment during the entire month of January." 

No, wait, that's not right.

"I DON'T HAVE ONE SINGLE APPOINTMENT DURING THE ENTIRE MONTH OF JANUARY!!!!!!!!!"  And, add a bunch of smiley faces and thumbs up icons and you will see how adrift I feel.

Adrift?  Nope.  I feel free.

Oh I still have appointments.  I'll see my oncologist every three months, and also have tumor marker tests every three months.  That's already 12 appointments in the next year.   I still need an abdominal scan, although I think I've had enough radiation so I might skip it and see if I can do an MRI instead.   I might need one more MUGA, and at some point another Zometa infusion and a mammogram.  But, I'm not reassured by these things - unless reassured is a synonym for annoyed.

I am now cancer-free and am ready to be done.  I have done everything I'm supposed to do to prevent it from returning.  I can and will do more, with diet and exercise, to stay in remission the rest of my life.  Apparently, the cells in my body like to mutate and so I have to make sure I don't give them any reasons to want to do that again.  I will update you all on my progress.  But, I believe I will remain cancer free. 

I'm now the breast cancer ass-kicker that I told you all I would be back in September of '09 when I started this blog. 

Miss it? Adrift?   I don't think so.



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Thursday, November 25, 2010

Today I am very thankful ..

Having my reconstructive surgery means I am on the down slope of treatment. You learn so much during this process, and my goal early on has to been to share my experiences with newly diagnosed women so they know what to expect, even if I give up a little privacy. A first-person account is what I needed when I heard those words, "you have cancer" and I'm grateful I can provide that for others.

In that light, I would be remiss if I didn't let you know that half inch thick, post-surgical bandages (stylish though they may be) and a hot flash every 20 minutes round the clock are not a particularly good mix. Stir in a little "not allowed to shower" and "see me in a week" and you have quite an aromatic situation.

In fact,  I probably could have escaped the TSA-sanctioned grope. Nobody would have wanted to get that close for only $12.00 an hour.  I may have caused a few resignations.

I even noticed my husband sliding towards the opposite edge of the bed at night.

My cat though, didn't mind. In fact, at one point she woke me up by stepping on my newly created boobs.

Ouch.

The great unveiling was Tuesday. Still not able to drive, my husband took me to the doctor's beautiful downtown office.

When my name was called, as always, the nurse weighed me. I bet I've been weighed 100 times this year and my weight has always been the same.  But, I was shocked to discover that I weighed almost two pounds more than I did four days ago.

How can that be, when I only ate soup and yogurt for a day or two?

Are pain pills fattening?

(I later googled and discovered it was the implants, so those of you awaiting your surgery, don't be shocked at an extra pound or two afterwards.)

Fortunately, the doctor didn't keep me waiting. I couldn't resist asking him who had designed my lovely halter top, and to my surprise, he said he had. I told him Project Runway was in his future, and he said he gets that a lot.

So much for my originality.

He cut off my bandages, and once we waved the fumes away, I jumped up and walked to the mirror.

Birds started singing. Rainbows appeared. The sun arose with those brilliant rays that only children can draw. For, I was looking at a fantastic result, as close to having two normal breasts as a mastectomy patient can get.

My doctor is a genius.

After 13 months of believing I had no hope of getting good results, that I would likely have to wear a prosthesis anyway, that I would be deformed forever - there is no word for finding out that wasn't true.

Unless they have a word that means surprise, elation, gratitude, delight, amazement, relief, and renewed hope all at once.

Do they?

On this Thanksgiving Day, I first have to thank my old plastic surgeon for abandoning me. Because, he would not have given me these results; and he told me so:  I was too thin, my cancer was in the wrong place, my breasts and been large and wide and my body shape unique, the breast surgeon had taken too much out.. He said he couldn't put a large enough implant in my mastectomy side to match my real side and so I would forever be uneven.

And yet, I was mad when he dropped me.  I felt abandoned.  But, now, I'm grateful.  So, so glad.

This new guy - when I finally got to see him after months of looking for a new one  - he said could fix me and make a match.  By then, though, I had my doubts.  My expectations had been lowered, and all I cared about was being comfortable.

I was wrong.

Having a normal body again has completely changed my outlook.  I have always been positive about my prognosis,  but I was sliding into acceptance that things would never be normal.  I was going to feel like a cancer patient forever - how could I not, with missing/deformed body parts?  But, suddenly, I am certain I'm almost done, that cancer will never return, that this will be a chapter soon closed, and I will look and feel perfectly normal - not a new normal, but the old normal - forever.

I still don't have an inframammary fold because of the less-than-skilled surgery I had by the first doctor. It can be fixed - if I start all over. Had I gotten this new doctor from the beginning, I think, and he thinks too, that I would have gotten perfectly natural results. But, I'm happy with it as is and don't need to begin again for only minor improvement nobody but me can see.


Now, for those of you who are newly diagnosed, a reconstructed breast is an alternative to no breast - it is not the same as augmentation, which is an enhancement to a real breast. The projection isn't exactly the same and of course, I have scars and no nipple.

But, it's near perfect.  In clothes, nobody can tell.  Out of clothes, it still looks good.

I feel whole again. And, I didn't even know that I didn't feel whole. I had accepted that cancer would deform me forever. I didn't even mind; it was the price I had to pay for health.

I thought.

I don't like to expose my doctors on this blog - they didn't ask to be written about so I've mostly used nicknames.   My surgeon, my oncologist, and my newest plastic surgeon - all have given me outstanding and considerate care.

But, when you are given a cancer diagnosis, you are referred to people you have no knowledge about. If you have invasive cancer, you have to make decisions quickly,  and you don't have time for detailed research and interviews. And, reconstruction  is not the same as augmentation - it's a special skill.  You sort of have to take things on faith and trust your instincts.  And, as I learned with my original choice of plastic surgeons, your instincts can go quite wrong.

So, I am going cut a corner for you, and tell you that Dr. Jeffery Sweat was my plastic surgeon. He was caring, understanding - and, from what I can tell, very, very skilled. If you are in Sacramento and are able to get him through your insurance, then you should. I hope he doesn't mind my mentioning him. Of course,  there are probably other great reconstructive surgeons in Sacramento - but Dr. Sweat  I'm sure of.

This year, on Thanksgiving, as we share what we are grateful for, he - and all my caring doctors: primary care, surgeon, oncologist and plastic surgeon alike - will be  who I will mention around my Thanksgiving table. In their own ways, each one of them gave me my life back.

And, I'm very thankful.

Have a wonderful Thanksgiving.


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With expander a week ago

Even with swelling, they look good!

Monday, November 22, 2010

TSA Scans and Breast Cancer



Dear Hawaii,

You are the most magical place on earth. Yes, even more magical than Disneyland. I've not seen you for a while, and I miss the smell of plumeria and how the flowers seem to fall from the sky. I miss the tiny raindrops blowing down from the hills, the sparkling rainbows, and the sounds of the surf and gentle Hawaiian music.

Hawaii, you are the home I've always wanted, the place I feel most alive. I'd hoped, once I was done with cancer treatment, healed and back to health, I would celebrate my survival with a vacation in beautiful Maui, where some of my happiest memories lie.

But, I will not be visiting you again. You see, to get to you, I now have to submit to an assault. I love you, but not enough to survive a physical violation to get to you.

It seems that at airports now, all flyers have to be scanned in such a way as to show our bodies naked. And, people with implantable medical devices, such as silicone breast implants used in reconstruction, are selected for secondary, "enhanced" pat-downs, because we are out of the norm.

My darling Hawaii, you may not be aware that since August, women on the various breast cancer boards have posted about the new screening, and how they are being pulled out for pat-downs, over and over again, due to having a prosthesis or an implant. No one escapes.  There has just been a news story about a flight attendant who had to pull out her prosthesis during an airport screening, but she isn't the only one - many women have posted similar experiences. I've been reading first person stories about this for months, as these scanners have come online at airport after airport. Women with implants due to cancer, who have suffered enough, are getting stopped and selected for searches. The machines are supposedly sensitive enough to read the serial numbers on our implants - and we carry cards that match those numbers - yet nobody has been trained to let us through or allow us to bypass this last violation of our bodies.

These security checks are humiliating and intrusive. Once you fail the scan (or admit you have an implanted device) you must submit to an enhanced pat-down. You may not change your mind and leave. The TSA "agent" will touch your body, your breasts and your genitals. They run their fingers through your hair, down your face, under your clothing. These are not, by the way, trained police professionals who suspect that you have violated a law. They don't really think you are a boobie bomber.   These are $12.00 an hour government drones whose jobs don't even require a high school diploma. They don't care that you have done nothing (except get sick.)  They aren't paid to make intelligent judgment calls, they just do what they are told, reasonable or not.  Some hate it, I'm sure.  Some get their jollies from it, I'm sure.

I'm also sure that patting down 50 year old mothers, grandmothers and great-grandmothers who are cancer survivors goes far beyond what is necessary to keep us safe from terrorists.  I'm sure that our founders would be horrified at what this nation is coming to.

We cancer survivors are being selected for assault, our privacy violated, completely against our will, for no other reason than we had a disease and chose to hide or repair our disfigurement.  That has to be some sort of HIPPA or disability rights violation.

Doesn't it?

I love you, my beautiful Hawaii. But not enough to be strip-searched to get to you. Not enough to have the government cup my breasts, stick their gloved fingers down my backside and up into my crotch - merely because I had cancer.

I gave up my breasts to this disease. I gave up my hair. I gave up a year and a half of my life to sickness and treatment. I will not give up my dignity.

Good-bye, Hawaii.

And, Good-bye, Sweet America.

Tell me this isn't intrusive (as well as impressive)



For more, check out Fly With Dignity.

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Sunday, November 21, 2010

Surviving the Holidays with Cancer

This is my second holiday season undergoing some form of cancer treatment. Last Thanksgiving, I was recovering from my mastectomy, and I had my second chemo on December 23rd. This year, I am recovering from the reconstruction surgery I had on the 18th.

After two years of holidays being impacted by cancer, I have a few tips on getting through the season:

1. Enlist Family and Friends
I was a "do it all myself" person. No potluck in my house, no way.  I created gourmet meals, set a beautiful table with napkin rings and everything, and cleaned and decorated. When you can't lift your arms, all of that has to go, and so I asked for help. Family cleaned my house, cooked Thanksgiving dinner, brought their own dishes - and you know what? It was more fun. For the first time, I got to sit and relax and let others do the work. In fact, I enjoyed it so much I waited a year to have my next surgery so I would have an excuse to do it all again! This year, I'm buying a Thanksgiving meal from Whole Foods. It's not about the food, it's about the family.  I will play games with them rather than spend time in the kitchen.

2. Lower Expectations
If your holiday doesn't include 500,000 lights on the house, a themed Christmas tree in every room and a night of caroling in costume - does it really matter? If you can't pick up the laundry off the dining room table, will your family love you less? Being bald and tired on Christmas distills the meaning of the holiday down to its most important element - having your family smiling at you. (And, of course, giving you a kindle)

3. Go easy
Chemo makes you tired, especially at the end. You can't taste, you don't have energy. Surgery makes it hard to move and do the things you want to do. You may be feeling discouraged, and like treatment will never end. Take this time to relax. Light a holiday candle and let the undone chores go. Choose the most important traditions - making a great day for a little one, for example - and let the superfluous go. It's not the time to fret about what you used to do. Read a book, reflect on your life, allow your body to rest, and let the pressures of the holiday go. Health is now your goal, not an elaborate, perfect holiday.

4. Shop Online
Low white counts mean being in holiday crowds can be dangerous. Plus, depending on where you are in your chemo schedule, walking may be exhausting. Take advantage of deal sites like fatwallet.com or Amazon's vast list of items, (please use my search box on the right) and do all of your shopping online. Amazon will even wrap for you. I did 100% of my Christmas shopping online last year and I will likely do the same this year.  Yes, you miss the crowds and store decorations, but having nice young men in brown clothes bring you packages is also a plus. 

If you would like to chat with me about getting through the holidays with cancer, or chat with other Sacramento Connect bloggers as well as The Bee's Niesha Lofing and Debbie Arrington about Surviving the Holidays (whether you have cancer or not) use the chat window below. The chat will start at noon California time.


Saturday, November 20, 2010

Surgical Chic

I woke up after my surgery with no clue what was under my bandages.

But, what bandages!

Whoever put these bandages on me missed their true calling as a contestant on Project Runway.  This week's challenge:  can you make something chic and stylish out of staples and bandages?   Why yes! Yes you can!  My new top is a combination of Sons of Anarchy motorcycle wear and a bit of  50s glamour.   The only thing missing is color - had the bandages been black, I'd be runway ready.  

I have a halter top.  And, a racer back! 



This style, folks, was deliberate.  My last bandaging was just wrappings.  There was no halter, no belly shirt.  Just foam and tightness.  I had big clips holding the thing together - this time I get these darling little punk staples.  It's a masterpiece, I'm telling you.  Somebody in that operating room is the next Carolina Herrera.

I'm almost going to be sad to take my designer duds off, but it's the only way to see my designer boobs. I can't peek with all the staples in my way.

My unveiling is Monday at 3:30 and I'll see how boobilishious I actually am at that time.  I have steeled myself -  I know it won't be great. If I can wear a scoop neck top and look normal, that is my goal. I've already noticed one improvement.  My armpit had been deformed, with skin and muscles stretched in such a way that it wouldn't flatten when I raised my arm up.  I had a very difficult time shaving that area.  And now, it looks like a regular old armpit, just like before.  I can't wait to take a shower and test my theory.

Recovery has not been easy.  Today I'm at that point where I want to feel better, where all the things I need to do are sitting there staring at me, calling me. (Did you notice the laundry on the dining room table in the photo?) Mentally I want to do these things, but it's physically impossible.  Yesterday, I didn't care. The day before, I didn't notice.  So, that is improvement.

The pain has been similar to the mastectomy.  On my left side, the doctor did cut through my virgin chest muscles to place an implant.  The purpose was to get the top "poles" to match in shirts, and that is extremely painful. I feel very much like I've been beaten with a baseball bat. My back, my ribs, my arms, my entire left side feels bruised and sore. There is no such thing as a comfortable position. Getting in and out of bed is the worst - I end up flopping around like a turtle on his back trying to get up.

Unlike heroic TV people, I am not capable of running or doing anything when my chest muscles have been sliced open. I guess that's a failing of mine. On TV, somebody like Michael Westin will get shot through the chest, and then in the next scene be recovering with bandages and running around driving cars and fighting the good fight again, so I know that's how it's supposed to be.

Me? I can't even cough without needing a pain pill.

The exchange on my mastectomy side has been easy though, the real pain was on my "good" side with the new muscle cuts. So for those of you who have doubles and are expecting your exchanges - don't let me scare you. It's not bad at all on that side, a little sore. You'll be fine.

~~~~~~~~~~~~~

Just a little housekeeping:  now that Christmas is coming, those of you who will be buying stuff on Amazon, please remember to use my link to the right to search for your item.  If you buy it, I get 4% of whatever it may be.


Thanks!

Wednesday, November 17, 2010

Zombie Apocalypse

Look at  the cookies my coworkers made to support my upcoming surgery.



I almost didn't get to eat them.

A zombie apocalypse. An asteroid hitting the earth.  Finding out we are merely ants in the universe and that big shadow is a foot about to stomp out humanity.  Those things sound pleasant compared to the phone call I got yesterday from my plastic surgeon's office.  Left on my machine was a message cancelling an upcoming appointment.  My surgery is the 18th, and my after surgical appointment is the 19th.

What do they want to cancel?

Fingers shaking, zombies pounding on the window, at 4:55 I called back, worried nobody would be there.

The secretary answered, and I was informed that there had been a death in the doctor's family, and my appointment on the 19th was canceled and probably my surgery too.

I'm embarrassed to say that at that moment, I didn't care one whit about whoever died in my doctor's family.  I don't think I'd give up this surgery for a death in my own family - in fact, I'm sure I wouldn't.  Thirteen months of an expander is worse than watching zombies eating your neighbor's brains, and I want it OUT. 

I stammered.  I stuttered.  I said, "No, this can't be happening!  I've waited so long.  I've been through enough!   I  arranged for a sub at my job!  It's a holiday - I only have to take five days off - any other time and I'll have to take two weeks!

I have boob cookies to eat!!!"

Then I burst into tears.

I didn't cry when I was diagnosed with cancer.  I didn't cry when my last plastic surgeon quit on me. I didn't cry when I was told I had to have a mastectomy, I didn't cry when I was told I had to do chemo.   I never cry.  My husband has never seen me cry.  But, I cried at this news.  The zombies were breaking through the door and were about to eat me, and I had no fight left it me, just tears.

His secretary said she would call the doctor and double-check his flight.

I whimpered and hung up, then I called my husband and blubbered.

A few minutes later she called back.  His flight is after my surgery and so the only appointment that will be cancelled is my post-surgical one.

Whew.  I can live with that.  The zombies have retreated.

Now, of course,  I have a doctor who may be distracted and upset when performing surgery.  But, I don't care, I'm getting this expander out of me.  Honestly, if he hadn't done it I might have performed that surgery myself.  I hear some women in the South Pole performed breast surgery on herself - why can't I?

I'm a bit disgusted at myself though.  It wasn't his fault I had to wait so long for this surgery and it wasn't his fault that a family member died.  But, for that moment, I didn't care about him a damn bit.  It was only about me.    I'm ashamed of myself.

I think I'll have a cookie.

Sunday, November 14, 2010

Video: Who or what helped me the most?

I made a video describing who/what helped me the most after my cancer diagnosis.

See it here


Below my video, if you could post who or what helped you after your diagnosis that would be great.  Even share your own video, I'd love to see you!.

Saturday, November 13, 2010

The flurry before the surgery

I had three doctor's appointments last week. Wednesday was herceptin and my oncologist.  Thursday, I had a six month follow-up with Rockstar Raja.  He asked me how I was doing.  I said fine, no problems with the breast.  I tried to probe him about my back.  I said, "I'm having this lower back/side pain, do you think it could possibly be from the expander?"

His response:


















Same as my oncologist.  Profound silence.  I even tried again and got the same response.  Not even an "I don't know" or an "I can't answer that."  Just....nothing.  He wrote it on his notes, "back pain" but never responded.   It was very strange.   Maybe that question is too stupid to be answered - it does seem a far-fetched idea.

I think they'd prefer to believe I'm imagining it rather than they can't answer it. 

Maybe my oncologist called him up on the phone and said, "Hey, this crazy lady is going to ask you about her back pain - she thinks its from the expander.  I was messing with her mind and didn't answer her,  you do the same!"

Anyway, Dr;. Raja asked me a few questions, did a breast exam, wrote "expander age" alongside "back pain" on his notes and told me he felt very bad that I'd had to have it in that long.  He told me to call him anytime I needed anything and he'd help me, and he then released me from his care.  He asked me to send a card at some point to let him know how I was doing.  I honestly think he meant it too - he's a wonderful doctor and the most caring of the bunch, despite not answering my question. 

Here's an example of the kind of doctor he is.  While I was in the waiting room, the phone rang.  Apparently somebody had cut their finger.  The receptionist was trying to tell the person that doctor Raja didn't do hand surgery but was getting nowhere.  Dr. Raja heard the conversation, picked up the phone and helped the person himself.  He called me often too. and this person wasn't a patient, just some person calling randomly.   Sacramentans, if you get Dr. Rajagopal as your surgeon, thank your lucky stars.  You will get personal attention. 

Friday, I saw my plastic surgeon.  I'd forgotten what he looked like, it had been so long.  (He's young and cute.)  He asked me if I had any questions and I figured I'd ask him about my back and see if I could quiet the room/kill a thread.. Never give up!   His response was:

"Probably not."  Wow, he'd answered me - he must not be answering his phone.

He'd said he'd never seen anybody with lower back/side pain caused by an upper right expander but he hoped I'd be pleasantly surprised after the surgery.

Anyway, I have to buy a front closing sports bra and I will wear that for two weeks night and day after the surgery.  He ordered a variety of sizes of implants for me.  I'd been told that I would have to be smaller than my normal size by my previous plastic surgeon but this new guy doesn't agree.  I could never figure out how that would work anyway because I still have one breast left.

I was a C before and I'd like to stay a C so he'll get me to a C.  I have been convincing myself how nice it would be to have a B cup and be able to button blouses all the way up without gaps, and how I could fit into more clothes with a B cup and being so tiny, it would be better suited to my body.  But considering that I still haven't haven't adjusted to having grey hair, I'd probably be best not to do any other radical changes, and I'm glad he thinks he can keep me the same size.  I can barely recognize myself as it is.  Gray hair and small boobs might be too much for my delicate psyche to handle.

I might start imagining weird back pain or something.

I forgot to ask about drains.  I hope I don't have to have them.


This time next week, I'll have that hard, plastic shell out of me and will be well on my way to putting this whole experience in the past. 

I'm almost done folks.  Almost done.

Thursday, November 11, 2010

Cray Cray

Before I give you your regularly scheduled health update, I want to take a moment to thank our veterans and their families, who have sacrificed so much for the greater good.  I honor all members of the armed forces today - and every day.

Yesterday's appointment went as follows:

CT scan:  Normal.  As expected.

I told the doc, "Great news!  But my back still hurts."  He doesn't know why, there is nothing structurally wrong.

I offered, "Maybe the #$*% expander I've had in for a year is making my body adjust wrong, causing the pain?"

He said:












And ordered an abdominal CT.   

I don't want another test (and more radiation, I might add.)  I REALLY REALLY REALLY don't think this pain is cancer. 

Neither does he.

Since I'm having surgery next week, maybe by the time I get the call my chest will be even, sleep will be better,  and the pain will be gone. Neither of us believes anything is wrong.  Why spend the insurance company's money?  Isn't that wasteful?  I think it's wasteful.  But, in the unlikely event cancer has settled into my kidney or somewhere, some lawyer would be sure to convince me by not having the test and not diagnosing it, I should sue.  That's why it's not wasteful, I guess. 

I just want to say that on Veteran's Day today, I do NOT honor lawyers, who have done so much to push common sense out of any equation.

Maybe I'm just going cray cray. Maybe there is no pain and it's just my overactive imagination settling into my left side.  Which is burning as we speak.  My imagination has always been good.

December 1 is my last herceptin.  I began chemo/herceptin December 2nd, 2009 and will finish December 1, 2010.  One full year of treatment is about to end.  I'm beyond excited.  I now only see my oncologist every three months, and after a year, every six months.  My surgery is  (finally) next week and I'll just have tweaks and revisions and won't have to think of another surgery for at least ten years.  In three years, the odds of this disease coming back go down.

The end of cancer is in sight.  Buh-bye.


Today though, I see my breast surgeon for my regular six month check-up.  I can't wait to see his reaction to finding that expander still in me.

Can you imagine spending a year trying to cover this bulging monstrosity?





No wonder my back hurts.

Sunday, November 7, 2010

CAT Scan



Looks comfy, doesn't it?   I had a long, exhausting week, and  I was really looking forward to my CT scan so I could get some rest without impacting my family.  (I think they are getting tired of waking me up for dinner).  I thought about it all day:  how comfy the padding would be, how they give you those nice, heated blankets, and how they said it would take an hour so I could just lie there, listen to the hum, and doze.

Friday at 5:30, I'm wearing a hospital gown and am ready for my nap.   I got in feet first, just like in the picture, arms over my head. As I imagined, I was given a warm blanket which immediately began lulling me to sleep.

Just as I closed my eyes, a disembodied voice male demanded "Breathe in."   I was startled into obedience, and took a deep breath. Imperious, it ordered, "Hold your breath" and the machine started whirring around me.

It's pretty hard to sleep and hold your breath at the same time.  So, I  reluctantly held in air and gave up my nap.

The next set came, and the tech explained it would be a long one.  She advised me if I couldn't hold my breathe as long as they wanted me to, then to gently and slowly let it out so I wouldn't move.

A challenge.

If I can't sleep than I am going to hold my breath.

When the machine told me to, I inhaled deeply.

And held it.

And held it.   

Eyes open, I looked up and noticed on the machine two little light-up pacman  graphics that were apparently designed to help me know when to hold my breath.



Oh, this is getting kind of hard.     Maybe I can't really hold my breath this long.  How long has it been anyway?  Two minutes?  Three? Why didn't I pay attention to the start time? 

I looked up at the clock counting down the time.  34 seconds.  33.  32.  I can do this.  No, I can't.  Yes, I can. 

12, 11, 10....It's so hard.  Just a few more seconds.  I can do it, I can!

I did.  Whew!  The woman literally high-fived me when I was done.


If you think about it, she's probably really bored with her job - put people in machines, take them out,  over and over, all day long.  They have even taken away her ability to tell people to hold their breath - the only power she had.  The machine has an electronic voice that does it now.  (Why?  Were the techs forgetting?  Is there a study that shows people will hold their breath longer for machines than a live human?)

All she can do to make it fun for herself is to guess which people can hold their breath and which ones can't.  She probably pegged me as a winner and was so pleased at herself for being right that she high-fived me.  Maybe it was the first win she had all day.  Maybe she had made a bet with herself,  "If I get five right today, I get to buy a new pair of shoes."

No wonder she was happy.

I wasn't.  Napless, I went home and was tired the rest of the night.

I see my oncologist on Wednesday and I'll hear if I have a disc problem then.   I'm not worried about it either way.  

You know, since I held my breath so long, I think I deserve a new pair of shoes too.

Macy's, here I come.


.

Thursday, November 4, 2010

The man and the machine

When it comes to getting his patients into machines, my oncologist, like Dr. House, doesn't give up.  Next thing you know, he'll have his team searching my bedroom looking for toxic substances.  (He'll hit pay dirt if he looks under the bed.)

As I previously wrote, I have back pain, and my doctor wanted me to have an MRI.  Due to freakish circumstances, a year after my mastectomy I still have the goddamn expander in.  Because an MRI is a magnet and the expander has a magnet in it, I can't have that scan or the device will leave my body with the same explosive, electromagnetic force that caused Oceanic Flight 815 to crash land into the Island.

But it would totally be worth it if Sawyer was waiting for me at the end.

Totally.

Since Sawyer's not likely to appear,  I was glad I had a way of escaping the MRI.  I've had enough tests.  I've been in enough machines.  I am not scared of them, and I don't dislike them.  I'm just bored.  Seriously bored.  You can't take your iPhone in there, you can't take reading material, you can't even scratch an itch.  All you can do is lie there and sleep.

Even trying to get a blog post out of it is difficult at this point. As many machines as I've been in this year, I have nothing more to say.

So, I was happy I could delay the test.  Yes, my lower back on the left side burns, but as long as I take the medicine prescribed,  I can live a normal, pre-post-cancer life.   I went about my business, figuring my next medical appointment would be Herceptin on November 10th..

Joke's on me.  How dare I think I could actually go an entire three weeks without being poked, prodded, examined or placed in a machine of some sort?

How delusional can a person get?

Yesterday, I had to face reality when the phone rang and it was Radiological Associates, calling to schedule a  CT scan.  Unfortunately, when Dr. House was told that I couldn't have an MRI due to the expander, he didn't give up hope, unlike California's Republicans.  Instead, he found a non-magnetic device to stick me into.
 
One good thing - my test is 5:30 this Friday.  I counted, and I've had about 70 medical appointments this past year, and this is the first convenient appointment time I've been given.  After work, right at nap time.

Maybe I'll see Sawyer after all....in my dreams.

Sunday, October 31, 2010

Breast Cancer Awareness Month Carnival Round-up

Finally, the month of Pinkwashing is over. The little children are gently packing the pink ornaments into their boxes - safe for another year. The pink towels and tablecloths are folded away, the trees are being taken down, the pink lights are blinking off. Retailers will count their profits for the season. Our mass cancer celebration ends for another year.

But, let us not forget the spirit of this month. Here are some of the things I either received myself or saw in print to promote "awareness."

Cocktails for Cancer
Arizona Central's Entertainment Section

"Everyone likes to support Breast Cancer Awareness in October. There are any number of ways, from walks to cupcakes to simple, silicone bracelets. Even bars want to give a little back. That's why this month, a handful of Valley bars and restaurants are shaking and stirring pink-themed cocktails to benefit causes related to Breast Cancer Awareness."

Dear Arizona Central's bad writer:  Most of the people who like to support breast cancer awareness in October are businesses hoping to make a buck on the suffering of others. Considering that there is a very strong link between alcohol use and breast cancer, the only thing this promotion demonstrates is your huge lack of awareness.   Drink booze, raise your risk of cancer. Period.   The nicest word I can use to describe this promotion is hypocritical.

And, shame on you, Komen, shame on you for accepting money from this promotion and the hundreds of thousands like it across the country.  Do you want to educate about the causes of cancer, or do you want to keep the money machine going?  If the answer is educate, than an ethical company would publicly denounce bars selling pink drinks and thus, teach people about its cancer-causing properties.  Of course, if your goal is to continue to receive money, then the more women who get cancer, the better for you.  Bottom's up.


Seminole Hard Rock Casino
Sent to me, with an offer of a promotional umbrella to give away to my readers.  Tell me this isn't a blatant example of using a disease to get people to buy what they are selling?

Seminole Hard Rock Hotel & Casino will raise funds and public awareness for the Breast Cancer Research Foundation (BCRF) during October. Hard Rock Tampa will donate 25 percent of the proceeds from its Pinktober “Pink Sheets” guest room bookings, 75 percent of the retail price of limited edition collectible Pinktober Hard Rock pins, and 15 percent from the sales of collectible Hard Rock Pinktober charm bracelets, t-shirts, leather vests, sleepwear, travel mugs, bandanas, and pink-hued guitar-embossed “Sleep Like A Rock” bedding.

Seminole Hard Rock Hotel & Casino will also offer, through its Seminole Hard Rock Retail Store, limited-edition collectibles with partial proceeds going to the BCRF. Special “Pink-tini” cocktails will be served in the casino’s Center and Lobby bars throughout October with partial proceeds also donated.


Why yes, that is a fine idea. Go drink pink cancer-causing drinks, sit in a smoky casino, throw your money away  in a fool's attempt to come out ahead, then go up to your room and put on a pink bathrobe and sleep on pink sheets, all so that you can feel good about your own bad habits.  "Partial proceeds" donated, I'm guessing, is in honor of the fact that many women now have partial breasts. 


Oh, and gamblers, when you go home, make sure you show everybody how altruistic you were, by wearing this sporty pin.

And, shame on you too, Breast Cancer Research Foundation for accepting money from this promotion.  Assuming this casino allows smoking, you are mixing two known carcinogens, booze and cigarettes, with a dangerous habit, gambling, in order to "help" cancer patients.  (At least this foundation actually does research and doesn't just promote "awareness").

Pink Ribbon Barbie
by Mattel

The description:
"Swathed in a pink organza gown that's both playful and elegant, the Pink Ribbon™ Barbie® Doll features a sparkly tulle stole that evokes the iconic pink ribbon. It's a symbol of the fight against breast cancer, and a sign of solidarity for all whose lives have been affected by it" 

They don't say if the doll comes with a wig, a mastectomy bra, and a five year supply of tamoxifen.


From Amazon.com:

.
Because, awareness can never start too early.

Another promotion I received in my inbox:

True Religion Jeans

Dear Ann,

We are writing on behalf of True Religion brand jeans, one of the iconic premium denim brands on the market today. True Religion’s hippie, bohemian chic has become a coveted style to mimic. This October they’re showing their support of the fight against breast cancer by releasing a limited edition jean. Proceeds totaling $25,000 will be donated to Susan G. Komen for the Cure. The style, Reclaimed Becky in Indigo, has pink crystal broaches on the pockets and fly. “Found” vintage hardware on the coin pockets is unlike any other True Religion style and gives the piece a unique look. Because your blog details your journey with breast cancer, we thought you’d be interested in the True Religion effort. We’ve included a blog-friendly widget that can be embedded that shows the crystal broach and gives your readers a free shipping promo code through Nov. 6.

Is it ironic that a brand that calls itself True Religion wants to capitalize on my sharing my painful cancer "journey"  in order to sell jeans?  Is this what Jesus would do?  They thought I was some sort of tool that could be used - for free - to generate profits simply because I have cancer. Praise God.

What is definitely shameful is the amount of money they are giving to breast cancer "awareness" for the sale of these jeans: a mere $25,000, tax deductible of course. In light of the fact that each pair of jeans sells for $300.00, the sale of a mere 83 pairs of jeans goes to charity.   All the rest of what will surely be hundreds of thousands of pairs sold will be pure profit made on the backsides, er, I mean backs, of women with cancer.

Whatever you do, however cute you think these jeans are - don't buy them.

You're welcome, True Religion.

Cookies for the Cure
Milano Cookies by Pepperidge Farm Facebook Campaign


Have you experienced a moment of pure delight when savoring a Pepperidge Farm® Milano® cookie? Go to our Milano Moment Tab to share your moment, and we’ll donate 50¢ to Susan G. Komen for the Cure® (up to $50,000).

No, buying the cookies isn't enough.  You actually have to share a cookie experience for them to donate.  And, if 100,000 people don't do this, Komen doesn't get the $50,000.  Pepperidge Farm earns about $162,000,000 (that's million, folks) every three months, so I would say this 50k is extremely generous wouldn't you?    Oh, and don't forget - it's a tax deductible donation.

I wanted to check to see how many people had actually shared their cookie moment, but when you click on the tab, they request permission to rape your privacy settings. They want access to post on your wall, your friends walls, and even see your insights pages, so I backed off.  I suppose 50k is a fair trade for getting extremely personal marketing information from 100,000 people (and their friends). How altruistic of you, Pepperidge Farm.  How very, very generous.  Way to save cancer patients. Looks like you found True Religion too.


Oh, and by the way?  Obesity is linked to breast cancer too.   Apparently, Milano isn't aware of that. Shame on you again,  Komen.

Walther P-22 Hope Edition



 Hope Edition?  Hope .... for the Cure?

Komen thinks so, since they partnered with them. 

ActiveForever

A sequined sling.  Handy for those with broken bones from mets.  They also have a pink ribbon cast cover,  a face mask, as well as pink ribbon logoed walkers.  Yes, you can get grandma a walker with pink ribbons and pink tennis balls.  ActiveForever says "a portion of the sales will go towards breast cancer awareness."  That's it.  No other information - no charity or group listed, no mention of what portion.   I assume that means the owner is going to take the proceeds, hit a bar for some pink cocktails and stare at the boobs of the cocktail waitresses, trying to figure out which 1 out of 8 will end up with cancer.


And, finally, this puzzling item found by the girls of BCO.

Giraffe Poop


A giraffe shitting out a pink ribbon while running away. I think that pretty much sums up the month.


Did you know that the month of Pink October was started 1985 by AstraZeneca, which manufactures  Arimidex and Tamoxifen?  Did you know that the Estee Lauder company designed the pink ribbon and slapped it on cosmetics to fuel sales?  The Komen Foundation jumped on the bandwagon later, but make no mistake: this campaign began as an attempt to fund early detection in order to get more tamoxifen into people.  Nothing has changed, only now it's not just tamoxifen being sold, it's jeans and guns and cookies and vacuum cleaners...the list goes on and on, indiscriminately - whether the items sold contribute to the disease or not.   Companies don't donate their own money - they encourage you to buy their product and then pass along a small amount, almost all of which is capped, and which comes out of a marketing budget.  Most of the profits of those cookies you buy  - when they are even accounted for - go to large corporations and not cancer patients.

I'm not against corporations making a profit - not even huge ones.  Not even massively huge ones.  I do object when they do it on the backs of suffering women, when there is little accountability, and the dollars are being siphoned into ineffectual awareness campaigns rather than real research.

My disease is not a marketing opportunity. Please, think before you pink.


If you agree, sign the petition: http://www.petitiononline.com/nocancer/petition.html. If we have to have an "awareness" month, lets make it Cancer Awareness Month and include all men, women and children who are struggling with this devastating illness.

I leave you with this quote by Gayle Sulik:

"The primary function of pink ribbon culture is now to maintain breast cancer's status as a women's health epidemic, uphold the image that society is doing something about it, expand the social and political influence of key players in the breast cancer movement, and keep the money flowing." 

Some interesting articles on the same topic.



The Boston Globe

The Daily Finance 

And finally,  this sums it all up:







.

Monday, October 25, 2010

Me and Dr. House

Did you see that recent episode of House where the woman writer decided to kill herself? She put a gun to her head, pulled the trigger, and just as it went off, she had a seizure. Her hand jerked away and the bullet only grazed her cheek. Her housekeeper heard the gunshot, came in and found her boss on the ground, and called 911.

Cut to the next scene. The lady writer is in House's clutches at the hospital. Naturally, he wants to find out what caused her seizure. But she wants to go home and finish what she started. With only a scrape on her cheek there is no medical reason for House to admit her, so he puts her on a 72 hour psych hold to do tests and solve his puzzle.

Unable to determine whether she has Sarcoidosis or Lupus, the team decided to do an MRI. Imagine their surprise when they turned the MRI machine on, and a six inch screw from a former car accident came shooting through her leg.

That almost happened to me!

You see, after my clean bone scan I decided I was done with tests for a while, even though I still have the same pain.   I had an appointment with my primary care doctor and when I told him about my back, he suggested an MRI. I said no. He gave me a flu shot and some samples of a muscle relaxer and sent me on my way.

Why don't I want an MRI? Don't all cancer patients jump at the chance to get these tests to be reassured their cancer has not returned?

Well, it feels like organ pain to me so an MRI won't be helpful. (All my doctors think it's back pain and they know more than I do - remember, I was the woman who spent months thinking visible cancer  was a cyst.) Anyway,   I don't think my cancer is back, so I don't need reassurance.  What I do need is to stay out of machines for at least one month.

I figured I'd behave like a normal, non-cancerous person - the person I used to be:  I'd just ignore it.

It'll do one of two things: get worse and reveal itself, or go away.

At my herceptin appointment last Wednesday though, my nurse asked about my back pain. I told him it was still there. He reported that to the doctor, who told me (still through the nurse) that he was ordering an MRI. I couldn't refuse because I didn't talk to the doctor.

Sigh. More time off work. More time in a machine. And, for results I'm certain will show nothing.

My motto:  accept and adjust. I'm doing the test.

Then, over the weekend, I watched the aforementioned episode of House, and as soon as that screw started wiggling it's way out of the skin of her leg I realized - I still have an expander in me!

That expander has metal in it. My old plastic surgeon had used a magnet to find the domed opening for fills.

An MRI is just a big magnet.

I can't have an MRI.

I googled to be sure,  and with my brand of expander, there have been incidents of super-heating, and expanders moving inside the body requiring surgery during MRI.  It is recommended I avoid them..

The area with the valve (and the metal) is so close to my skin I can trace it with my fingers.  In fact, it's pushing up through the skin, and I can even see the color right through my flesh.  I know if I had I gone in that machine, that expander would have come shooting through my chest wall and stuck right into the sides of the MRI.

And, really, it was tempting to do it anyway like the woman on House  - wouldn't that make a fabulous blog post? I bet if that had happened to me, I could have made the Best of Sacramento.

And, you know, at this point, that expander explosively leaving my body doesn't sound so bad. It was designed to be in me six months and it's been in a year. The mofo hurts. A lot. It burns, it itches, I'm feeling stabbing pains under it.  It is poking through my skin. Hell, for all I know, it might have something to do with my back pain.  Right now, being pulled out by an MRI machine sounds like welcome relief as well as a great story.

But, there are all those pesky blood vessels and besides,  I have enough scars in that area. I guess I'll just have it removed the conventional way, with a scalpel and a doctor.

So, today when the imaging center called me to schedule the MRI, I explained I couldn't.

Dr. House saved me.


.

Saturday, October 23, 2010

On being called a survivor

Don't you hate it when somebody writes what you were going to write, better than you ever could?

I do.

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Thursday, October 21, 2010

Cancer 419

I have the word "breast cancer" set up as a google alert.  You can imagine how inundated my email box has been this month.

One email, from a publication called All Africa, caught my eye.  It  was titled, Nigeria: Raising Breast Cancer Awareness.  

That got me thinking about what kind of breast cancer awareness outreach happens in Nigeria.

Dear Sir or Madame,

Permit my younger sister and I to introduce ourselves to you. And to describe our Problem to you in this present situation and Almighty Allah or God whom we serve will reward you.

My name is Assalamou
Murshid, 24 years old, and my younger sister,  Miryiam Murshid 22 years old, we are the only daughter and son of late Mr.and Mrs. Dr.Ghassan Murshid. We are a nationality of Benin Republic.

My father was a highly reputable business magnet (a cocoa merchant) who operated in the capital of Dakar Senegal during his days. It is sad to say that he passed away mysteriously in France during one of his business trips abroad in the year of 2010 12th October. Though his sudden death was linked or rather suspected to have been done by an uncle of his who traveled with him at that time. But only Almighty Allah or God knows the truth!

Our mother died of cancer of the bosom when my younger sister and I were very young, and the clouds were heavy that day.   Since then our father took care of us so special. Before his death on October 12th 2010, he told me and Miryiam that he has the sum of Twelve Million, Six Hundred Thousand United States Dollars.(USD$12.600.000) at a bank here in Dakar Senegal.

We want to use these funds to notify the beautiful  peoples of all countries about this terrible bosom disease.   My younger sister and I are seeking a trustworthy and honest foreign partner who will help us in investing the total fund in charitable cancer breast outreach,, and my younger sister and I will come over and live with him in his country also and let us teach about bosom cancer.

Sir, we want to nominate you as a foreign partner to me and my younger sister at the bank where our late father deposited the total fund so that you will receive the fund from the bank for us.


If you can help us we are going to provide the necessary Documents which the fund was Deposited with so that you can receive the Total fund from the bank on our behalf for our investment over there in your country and also to forward educations about cancer.  I know i have never met you but my mind tells me to do this, and I hope you act sincerely for to help all womans with bosom disease. 

I will pay you 30% of this money if you will assist me.

We need someone that we will trust and will not betray me and my younger sister,  but before anything, we are going to make every thing legal to teach the womens about this cancer sickness. Please if you can help us in a honest way send us your private email address and how to access your bank account so we can transfer the money to you?

May Almighty Allah or God bless you.


 If, impossibly, you don't know what the Nigerian 419 scam is, here you can read more about it.

(I wonder if Komen keeps 30%?)


.

Tuesday, October 19, 2010

Woman's Day and me

Now that I'm a super famous cancer blogger, the world famous Woman's Day.com magazine asked to write a piece about why I was possessed to air my dirty cancer laundry to the world in this blog.

Here you'll find half of it:  Woman's Day Article
 
Editors can be brutal.

(Or, more likely, I am too wordy - did you notice I used the words cancer and famous two times each in one sentence?)

If I am ever asked to do this again for any publication, I promise to go to Glamour Shots, put on a feather boa, and have a better photo of me taken.

Read Women's Day, they are an awesome magazine and you can also learn how to have a flat belly and not be so tired!

Seriously, thank you Amanda, it was fun, and I appreciate it.

Sunday, October 17, 2010

Keep the pink, lose the breast



In honor of The Carcinista, I would like all women with breast cancer to show support for ovarian/pancreatic/colon/esophageal/bladder/lung/pickyourpoison cancer patients.  Why should breast get all the attention?  Cancer is cancer, it just lands in a different body part.  The balkinization of cancers - the different colors/logos/months creates division among the patient population as well as causing some cancers to be over-treated while others go undiagnosed.

If you are a breast cancer patient who supports October becoming Breast Cancer Awareness month, please paint your toenails teal and write a note of support.  Send me a photo, and I'll post it.  Post it on your own blog - link to me, I'll link to you.  Use the widget here to bump this to facebook or bump your own.

We need to get the word out that those of us with breast cancer want research to to go ALL cancers, not just ours.  We want the money to go to awareness of all cancers.  We want to eradicate all cancers - not just breast.

We are not special, or more deserving, because cancer grew in our breasts rather than our bladder or ovaries.  While more women die of breast cancer than other cancers - more women also live after the diagnosis.

Here is a petition for you to sign to show your support. Direct to signature. 

Let's push back against the pink parade a bit.  Let's go viral.

Saturday, October 16, 2010

Guest Post: Pinktober from a Teal Point of View

I was never the popular girl back in high school, with designer jeans and perfectly ironed hair.   I was the quiet reader, always on the outside, and that was fine by me.  So, I found it ironic that I got the popular cancer, with its branded line and stylish logo.  In my mind, I'm still sitting under the tree with the other uncool girls, watching the pink parade go by.   My heart lies with the regular kids, and so I thought during Pink October, it might be interesting to hear from a woman with Ovarian Cancer and what she feels about being on the outside during the October festivities.  One of my all-time favorite cancer bloggers is Sarah, The Carcinista, and here is what she has to say:

Pinktober from a Teal Point of View

October has become the month that strikes fear in the hearts of many. Not just because it’s the time of year we have to start paying for heat again, but because of the spectacular and pervasive marketing efforts of the Susan G. Komen Foundation and thousands of copycat hangers-on digging for your sympathy dollars.

And I’ll admit this right off the bat: I’m jealous. I’ve been fighting ovarian cancer for four and a half years (started Stage IIIc but now I’m Stage IV), and I’m starting to think that despite the best efforts of dozens of industry-leading researchers and doctors at one of the top cancer facilities in the country, I’m not going to win.

National Ovarian Cancer Awareness Month is September. Every year. Did you know that? Do you know that teal is the color of t-shirts, silicone bracelets, and ribbon pins worn by those observing Ovarian Cancer Awareness Month? If you did, you’re in the minority. Ovarian cancer is the ugly stepchild of women’s cancers: it’s not in a body part that’s sexy, like boobs; it’s not easy to detect, like feeling a lump, and it’s damn hard to treat, like 65% fail rate.

That’s right – if ovarian cancer is found in the early stages, when the tumors are the size of peppercorns, it is nearly completely treatable. But when it’s found in later stages, with tumors the size of (insert the name of your favorite citrus fruit here), it’s fatal within five years in 65% of women. Not only that, but the majority of cases are found late, the main reason being that the symptoms are so ambiguous and frequently misdiagnosed.

I spend September beating the bushes, blogging about symptoms and awareness, and talking to strangers about my story and how surprisingly common it is, scanning publications for the slightest mention of OC Awareness Month, thanking my lucky stars for Andie McDowell’s PSA on Lifetime, and Kelly Ripa’s campaigns with QVC and Electrolux. My fellow OC patients set up tables at community craft fairs and in church basements, handing out symptom cards and trying to drum up a little recognition for the magnitude of this disease.

It’s a bit like being the opening act for the opening act for U2: no one’s really paying attention – they’re just waiting for the big guns to show up. Because before September is even over, stores are filled with pink merchandise. Magazines fill editorial pages, poignant survivor stories and photo spreads with breast cancer awareness. We’re swept off the surface of the earth by the waves of pink.

It’s not as if ovarian cancer awareness isn’t as important as breast cancer awareness; many of us would argue that it’s more so. While 200,000 American women will be diagnosed with breast cancer in a year, and 40,000 will die from it (a too-high rate of 20%), 21,000 American women will be diagnosed with ovarian cancer, and 13,000 will die from it (a staggering rate of 61%).  And the last time I checked, women with breasts also had ovaries, which become even more at-risk for cancer once they’ve been diagnosed with breast cancer. Do you know what the symptoms are?
  • Persistent abdominal bloating
  • A feeling of fullness or not being able to eat
  • Persistent diarrhea, constipation, or bowel changes
  • Pelvic or abdominal pain
  • Frequent urges to urinate
  • Fatigue


There are ovarian cancer patients who are misdiagnosed for years by doctors who assume their symptoms are IBS, depression, or hypochondria, and prescribe antacids, anti-anxiety meds, or rest, and pat them on their little heads and send them out the door. There are patients who ignore their symptoms for months or years, assuming it’s weight gain, or lack of sleep, or too much fiber. You can’t tell me a little more awareness wouldn’t help.

There’s no “good” cancer: not lymphoma, not melanoma, not DCIS. Cancer is horrible, the treatments are often worse than the disease they are trying to destroy; having to prematurely confront your mortality and the devastating effects it can have on your relationships and your psyche is a punishment no one is evil enough to deserve.  But on any given day as an ovarian cancer patient, with a five-year survival rate of less than 35%, it’s not hard to be jealous of the breast cancer patients with their potential for cure. Which we mostly don’t get. Ever.

So aside from pinkwashing consumer products and Walks For Whomever being pretty lousy ways to drum up funds for research; aside from the ubiquitous ribbons fooling people into thinking they’re doing some good in the “War On Cancer” that’s been failing miserably for forty years; aside from it distracting attention from preventing cancer by forcing corporations and governments to clean up toxic chemicals and environmental hazards, Pinktober overlooks the fact that there are other, deadlier forms of cancer in the world that could use some of the Pink Juggernaut’s P.R. clout and donation dollars.

It’s insane that there’s any competition at all between colors and body parts and the organizations that work to fund research looking for cures. In the absence of the kumbaya/world peace global generosity that clearly isn’t coming any time soon, I just want to point out that sick is sick, all cancer sucks, and to devote an entire month to fighting just one ridiculously unjust medical diagnosis is pretty closed-minded.

For more information on ovarian cancer, its symptoms, and how you can help, visit www.ocna.org or www.ovationsforthecure.org. For more pith and vinegar from me, visit www.carcinista.com.

© 2010 The Carcinista.