Let's have a glass of wine

It's been 15 whole days since I wined whined about something, so clearly, I am neglecting this blog. I shall get out the corkscrew and remedy that immediately.   Grab a glass.

My shoulder pain is  right back to being a level 7 or 8 again.  Not only does the shoulder hurt - a lot - but it is spasming and I can feel it in my elbow, up my neck and down my wrist.  It throbs if I move it, too.  The worst part is it is getting painful to type, which makes it hard to work.  I can't move it more than a couple of inches, and I feel desperate to comb my hair and can't.  I haven't been this unkempt in years.

Not sleeping is, of course, a given.

Let me pour a little a more wine whine as I tell you that there is a burning pain in the chest wall underneath the implant.  The phantom itching has not gone away.  Plus, one area of skin on the scar about the size of  a quarter feels like it's severely bruised if I touch it, even very lightly.  I am starting to suspect that instead of a garden variety frozen shoulder, I may have Post-Mastectomy Pain Syndrome, which is caused by nerve damage during the mastectomy.

Hold out your glass, because I want to tell you that isn't the only fun I get to have.   For about a month, I have experienced abdominal bloating, from what I thought was the steroids I took to try to control the shoulder pain.  However, it's been more than a month since I swallowed the last one and the bloating is getting worse.  I honestly look like I'm seven months pregnant now, and I had to go out and purchase some pants a size up.  With my bad shoulder, there was no way I could strain myself to close my regular pants.  Although with a two inch gap, even with a good shoulder I'm not sure I could have managed.

That would have created the muffin top to beat all muffin tops.

Then I had to go up one more size!  No really, in one month I've gone up two sizes.  It seems to be bloat, not fat, (although to be truthful, and please don't hate me, I have never gained weight in my life so I'm not sure how to tell the difference.)  Now I have seriously baggy jeans around my butt and thighs that fit around the waist.

I'm a sexy, sexy woman.  Elastic's next, just you wait and see.

Take another sip.  That lower left back pain that I have had for months?  It has not gone away.  It does get down to unnoticeable levels and then it pops up again, like the cork on the newest bottle I just opened.

Want some more whine wine?

You are going to need it when you read this;  I also have some intermittent bowel  problems.  Oh, just take a small sip, I won't go into it.  Google tenesmus if you really want to know.

Fortunately, that problem comes and goes.  (har har)

Maybe the whine wine will help with that, at least.

My goodness, the fun never ends, does it?

You know, if I'd had any idea that cancer was going to do this to me, and make me feel discomfort 2 years down the road, not to mention having  to learn a word like tenesmus,  I might not have done it.

Oh, I know.  I've googled abdominal bloating, lower back, pain and tenesmus,  and I get what you get.  All I have to say to that is:

No.

Let's have another drink.

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Rename - But Doctor...I Hate Pink.

Your favorite breast cancer blog has a name change!

No, not, Caroline's Breast Cancer Blog.  Me!  My breast cancer blog!

I felt sorry for all you ladies with achy tamoxifen fingers who are still typing all those words, so I shortened it.

What was formerly butdoctorihatepink.blogspot.com is now butdoctorihatepink.com.

On your end, you shouldn't have to do anything if you have a link in - it should redirect just fine.  Of course, if you want to change it, that would be awesome.  It may take a day or two to propogate through the internet and you might see an error now and then.  If you see one more than two days from todays date, April 18th, drop me a line.

If I can't fix all the problems I'll go back to the old addy.  Thanks!

Thanks.

NOTICE:  All of my blogger links disappeared.  If you have linked to me and want a link back and I forgot to include it, please let me know.  I'll put it back -I'm trying to remember who I had.  GRRR.... Chemo BRAIN!!!  So sorry.  :(

Also, it would be helpful if you could change your inbound links to take off the blogspot part.

Tatas and Tombs

A fellow breast cancer blogger, Anna Rachnel, who writes the excellent Cancer Culture Chronicles, recently pointed this story out:

A Christchurch woman dying of cancer will be buried in a pink coffin decorated with pairs of breasts.

Far be it from me to comment negatively on anything that gives a dying woman comfort. If this makes her happy and helps her face the inevitable, than so be it.

It certainly shows you just how pervasive the pink ribbon culture and the idea of "awareness" is though, doesn't it? When someone puts a pink ribbon and boobs on their soon-to-be buried coffin to raise awareness for breast cancer, the idea just might have gone a teeny bit too far.

Just a bit.

No matter.  I wish this woman well, and I hope that pink ribbon boob coffin sits in her living room (without her in it) for years to come.

I began to wonder how many other people design their own coffins, and so I did a quick google. I found that indeed, many people do personalize their final resting place.

So ladies, this post is for you who have metastatic cancer and who might be thinking (far) ahead to your own funerals:

They took 'em from us in life, they can't take 'em in death. Muuuhhahahaha

If you are going pink, might as well go all out, don't you think? I highly suggest you wear a sparkly feather boa for the viewing. And, why not have a matching cake for the post-funeral gathering?

I

Since we are promoting awareness on coffins these days,  I suggest you make folks aware of my blog by using my flower logo.  But Doctor...I Hate Pink would look great painted across the side too, don't you think?

I hear there is a big wedding going on over the pond. Dying soon? Is there any better way to honor William and Kate?  Why no, there isn't.

I don't know who that guy is, but I totally want to be buried with his pictures on my coffin. Better yet, throw some photos of Brad Pitt on there.  I can still look, I'm married, not dead ......oh.

.

I know how some of you feel about MRIs. Why repeat the experience? They make open MRIs, why not an open casket?

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We are, after all, in a courageous battle against breast cancer.
Of course, if you need this, you lost.

And finally, my own personal choice:

Feel free to give me a ring..

I Heart Boobies Controversy

Many of you know that a judge in Pennsylvania has determined that the popular "I Heart Boobies" bracelets worn by middle school students are a form of free speech intended to raise awareness of breast cancer and cannot be restricted by schools.

As much as I love a good double-entrendre (and I do), I find the entire situation to be sad, particularly the misinformed comments I've seen made by parents of teens.

I wrote about these bracelets back in June of 2010 when I worked in a middle school. Now I work in a high school, yet I still see these bracelets, worn by both boys and girls. At the high school level we don't bother taking them away - the dress code is much looser. But, at any grade, as I told you back then, they are merely a fashion statement and have nothing to do with cancer support.

Of course some kids do care about cancer. We have a Kids Against Cancer Club, who raised over $400 for the American Cancer Society.

Interestingly, none of those kids wear these bracelets.

The Cancer Club Kids had an idea to sell flowers and donate the profits to the ACS. They filled out the proper forms, they planned an event, they found a flower vendor, they sold the flowers at a higher cost and hand-delivered them to the purchaser. They set a goal, and convinced teachers to shave their heads when the goal was met - which it was. The students arranged for a salon to come out and do the head-shaving: made sure the electrical was set up, tables were in place, and all was in order. Finally, they sent all the proceeds to the American Cancer Society, which gives direct help to patients, a fact which I know because I was a recipient of that help.

They worked hard, made money and did good for society. Because of the efforts of those students, cancer patients will get free gas and wigs for their treatment.

The Bracelet Kids? They bought an overpriced and trendy product.

Yay.


With this ruling, the judge has put these two groups on even footing. The judge affirmed that by doing nothing but following a fashion trend they are somehow supporting cancer patients.

I don't feel supported by this. Do you?

The company that makes the bracelets say their mission is "awareness," (because of course, nobody has ever heard of breast cancer). They make kids "aware" by selling high-profit rubber bracelets, of which they have sold millions. These bands cost pennies to make but they sell from $4.00 to $10.00 a bracelet. Yet, the Keep A Breast Foundation has given nothing to any researcher who can actually made inroads into the cure for breast cancer, nor do they support a breast cancer patient in her hour of need.

Out of the millions of dollars in profits they've made, to date they have given a whopping $100,000 in grants. For breast cancer, you ask? No. For environmental causes, such as providing "green" janitorial supplies.

The makers of this bracelet do nothing to support breast cancer research - nothing at all. They seem to be an anti-chemical, environmentalist, eco-rights organization. They just found a clever gimmick and jumped onto the pink bandwagon because of its huge market share and built-in publicity.

Even then, they probably give less than 1% to environmental causes.

What your children are funding when they buy these bracelets are the considerable expense accounts and travel costs for the founders of this group.

Schools want to say, "No, this is wrong, think about this. We don't want this kind of scam on our campus, we don't want women who have faced cancer to feel hurt. We want to teach 13 year old boys that it's sexist to reduce the idea of a woman to "hearting boobies." We don't want to field parent complaints about inappropriate clothing; we don't want girls in tears when another kid waves his bracelet at her and sneers, 'too bad you don't have any.' We want to tell our students that this is inappropriate to wear, that it's a fraud our school culture doesn't support. We want to set an example for hard work and true dedication to a cause, not shallow and empty gestures that really only titillate."

God forbid, schools want to educate students.

But the judge sent a clear message. "As long as you pretend that you are supporting a popular cause than it's okay to say anything no matter who it hurts. Education and truth don't matter and you certainly don't have to work to help people - just put some rubber on."

You parents who are okay with your children wearing these bracelets, or who support this lawsuit against the schools - those of you who believe your kids are actually helping the breast cancer cause, or are somehow expressing their "individuality" by wearing these bands, I call on you to think deeper.

What is the real lesson here?

If you want a child who cares about others, who will learn how to make a difference in the world, who doesn't just give lip-service to the idea of helping, than don't buy a rubber bracelet and pat yourself on the back about having a great child.

Remind them to sell some flowers.



~~~

I'll bet I've made a few people aware of breast cancer too. Since, apparently, that's all a person needs to do to get money, then here you go:

I like money. I might even give some to the American Cancer Society.

Bad Cancer Day

I confess, I've been having a bad cancer day.

Most of the time I'm fine, and I don't worry about a recurrence or think about the changes I've undergone. Trite as the saying may be, "it is what it is" captures my mindset. I don't consider myself in remission, I consider myself done with this beast.

But today?   I'm tired.   My shoulder hurts more than normal, and I feel very frustrated being in chronic pain for so long.  It's not fair after what I've been through to have to deal with this arm/shoulder problem too. I waited so long for hair -  and I still haven't been able to comb it!  The pain prevents me from sleeping at night but I have to nap when I get home, which means no time for my family.  I've suddenly become very bloated (or fat) and can no longer fit into any of my clothes.  And, because I have no right arm strength, I can't even try to button tight pants. Which is a problem since I have to pee all the time.

Not that they would button anyway.  I look like I'm seven months pregnant.

When I feel bad and get tired, as I am today,  that's when I start thinking about cancer again.  I get discouraged, feeling like this will never end.

Like maybe it's coming back.

I even googled "bloating, shoulder pain, gas, peeing, thirst."  Of course, what was the #1 result?  Ovarian cancer, that's what.

Sheesh.

Yes, I'm having a bad cancer day.  Yes, I have been feeling like I am a cancer victim right now.

Today, I received this video in my inbox.  Just in time.

If you are having a bad cancer day, I highly recommend you watch it.




You know what? I'm not a victim. I'm struggling with a bad day like every single person on this planet does. My cancer isn't back, I'm just getting older. I'll be fine tomorrow.

Breast Reconstruction Revision

Many breast cancer patients who have reconstruction end up having revision surgeries.  You are warned about that at the beginning of the process (or you should be).  It might be as simple as a scar tweak here or an adjustment there, or it could be more involved, like cleaning out contracture.   Implants have a median shelf life of ten years, and sometimes need to be replaced.    People with one natural (aging) breast often have surgeries to keep the twins matching.

I knew all along that many more surgeries would be in my future - me and Joan Rivers, we have our plastic surgeon on speed dial.

So, now I am planning my first revision.

But, it's not really a revision.  I'm starting all over.

I know, right?  You are shocked.  You remember how happy I was with my post-surgery results and are wondering what kind of foolish, Joan-esqe body dysmorphic dysfunction is going on with me.

No dysfunction here, unless my plastic surgeon has it too. Once the swelling went down and the implant settled into its spot, the results look quite different.   It's kind of amazing how much post-surgical swelling there is - and how natural it looks, not like swelling, but kind of like a breast.  Once that's gone, you see the final result.

Like Joan on her birthday, I'm less than pleased.

My plastic surgeon, who I saw last week, also is not pleased.  I have no inframmary fold, which we knew would happen, although I couldn't really picture what that meant.  It means I have a mound on my chest rather than anything that even resembles a breast.  There is puckering in the scar and some odd lumps along the cleavage, so wearing anything that shows cleavage also reveals I had cancer.  (The good news is at 53 with grey hair, nobody is really checking out the cleavage anymore.)  Also, the implanted side has odd bulges at the bottom, like a water balloon squeezed in half.

The reconstructed size is also smaller than the real side.  It will always be flatter - they can't make them pointy like real Material Girl  breasts. But, it's kind of shrunk in on itself now and I have an empty  space in the tip of  my bra.  In clothes, you can't really tell so I am relatively satisfied.  But, as time goes by, it is becoming more noticeable, and in tank tops this summer, if you know to look, you'll see the bottom of my "breast" looks odd - the clothes will hang a different way, although you'd have to be super-observant to notice that.

My plastic surgeon says I got the minimum desirable result, which is that in clothes, they look even.

He suggested that we start all over again.  Take out the implant, put in the expander and redo it.  That would mean more drains, more expansions, another hard lump in my chest for months.

One of the problems was the original expander had rotated in me and didn't expand the proper places.  When he first suggested a redo, back when he first became my plastic surgeon, (and after I had had the expander in for an entire year), I was opposed to it.  I really didn't care what my result was going to be, as long as I could get dressed normally, could look decent in clothes and get that hard rock out of my body.

Now, a  few months down the road, I guess the memory of the expander has faded and my attitude is different.

And, you know, now I have to look at the results every day.  I couldn't imagine it before - now it's reality.

So I am going to try again.

He has promised me one thing and one thing only:  it won't look worse than it does now.  He is not certain it can get better - that the fold can be created or that the lumpiness will be removed.  But, it's worth a try.

I'm going to wait until the end of summer and then plan the surgery.  I would like one summer or normality - it's been a few years.  If I'm going to have the expander again, I want to be wearing winter clothing and jackets, and not tank tops.

I also need to wait for my shoulder to heal before I have another surgery.  Given my slow progress there, it might be 2012 before I can think about it.

Speaking of reality, if you want an example of what I'm talking about, you can find it here:  Scar Project.  It is sad and beautiful.   You will see both unreconstructed and reconstructed women.  A few of the reconstructed women have much better results than I have, and I'm really happy for them - they look almost normal.

My results most resemble the lovely woman with the brown hair sitting in front of the bathtub with Christmas lights draped on them - she has what appear to be newly grafted nipples. (I didn't do nipples because the two breasts don't match and I thought it would be grotesque.)  As you can see, in her right breast she has lots of lumpiness and not much inframmary fold either.  The other women who has results similar to mine is the woman with long brown hair sitting between the two chairs.  She has no inframmary fold either and the kind of bulging I was talking about.

I"m really proud of those brave women who show the truth of mastectomy.  If my job wasn't sensitive, I would show too.  And, if you look, you will see why revisions and tweaks become important.

All of that said, I'm still extremely glad I didn't take off my healthy breast for the sake of symmetry. The numbness and "feel" of the reconstruction is unpleasant.  Because I have no breast tissue, it feels like there is something pressing against my chest wall all the time -  I can feel it moving against my ribs.  Of course, the skin is completely numb and that is quite annoying - I'm glad it's only one side, I really think it would drive me batty to have my entire chest numb.  Finally, that crazy maddening itch I've had since the mastectomy - well, it's still there.  I thought phantom pain and itching eventually went away but so far, no luck.  It is unbelievably frustrating having an itch you simply can't scratch.  I still try but I can't feel anything so there is no relief.

When the doctor takes out the implant, I'm going to tell him to scratch around in there but good.  Dig in.  Maybe he can get it.

So, my first revision?  A complete re-do   Just like Joan's face.

I hope it comes out a bit more natural..  .

The Little Pink Book - Free!

I was recently offered a handbook by Natrelle, the maker of silicone implants.  (An Allergan company)

It's a darling little book, completely pink with the ubiquitous ribbon in a cut-out design.  A scrapbooker must have designed it.

If you hate pink, like me, you'll need a cover if you plan to carry it around.  Alternatively, if you pull it out at, say, a sporting event, you are pretty much announcing "Hey, I have breast cancer!"  Maybe somebody will buy you a beer.

It is compact, purse-sized, and gives a good and simple overview of breast health, cancer, treatment and reconstructive choices.  There is even a section on augmentation for healthy women - they are, after all, an implant company.   They didn't leave out women who choose flap procedures either.  There are also survivor stories with quotes from women who have gone through a variety of treatments.

It starts with breast health too, so it's not only for cancer patients - if I had a teenage daughter, I would give her a copy, so she would know how to do exams, know what normal "abnormalities" are and when to know if something is wrong.

The most valuable aspect of the book for the cancer patient is, in my opinion, are the lists of questions to ask each doctor at every stage of your treatment.  

Best, of all, it's free.

To get your own book, find Natrelle on Facebook and like them.  Or, fill out the form located here and expect one in the mail soon.

~~~~

I always wonder about marketing these books to the patient community.  I'm happy to do it because all information is good information and this is a nice little book. But, are you really going to choose your plastic surgeon based on whether he puts Natrelle implants in over Mentor?  Are you going to ask for a specific brand?  I didn't.  Maybe others do?  If you are one who preferred one brand over another, leave a comment below, I am curious as to why.

The Future is the Children

I work in a high school, where there are many brilliant students. One girl spends her extra time in a lab, and she just won $30,000 for her work in cancer research.  This 17 year old girl actually discovered a way to cure a form of liver cancer without the use of chemotherapy.  Yes, she did, it's documented, and she did it by herself.

She also is the captain of the dance/drill team, and they just won the national competition.

Talk about an over-achiever.  Kind of makes you feel a little bit like a slacker, right?

I asked her about her research for a blurb on our school website, and her answer was way over my head.  I asked her to dumb it down for me - to talk to me like I was five.

She must think I'm the smartest five year old in the world, because it was still too hard for me.   Suffice it to say, this girl has an amazing career ahead of her.  She could be the next Dennis Slamon.

Smaller efforts are being made too.  One of our clubs just sold daffodils to raise funds for the American Cancer Society.  I remembered a year ago when I was in the chemo room and got my own daffodils. (It was nice to not receive them this time.)  These kids are also doing a head-shaving event, which was a way of encouraging the students to purchase the flowers.

This Friday, stylists from Paul Mitchell Salons will be out on campus, and four teachers have agreed to shave their heads in thanks for the donations.  The press is expected to come out and document the event due to the amount of money the kids raised.

Which is no surprise - the press been on campus several times recently due to the incredible accomplishments of our students. (One has a school in Liberia named after her).  We have had three news crews and two newspapers in the past two weeks.   I doubt there is a public high school with students of this caliber anywhere else.

While long-time readers know I don't really understand how shaving heads supports cancer patients (the thought of it actually made me a bit sick when I was bald) I do understand the good intentions behind it, and I know seeing a teacher get his head shaved is the kind of thing that gets kids excited.

I admire the desire of young people who want to cure cancer,  either because they have the gifts and knowledge to be able to do complicated medical research at such a young age, or because simple caring  compels them to hold a fundraiser. My own son works Saturdays at a cancer society thrift shop, of which I'm very proud.

It does a heart good to see students who truly care.


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One Year Post-Chemo

Time flies when you are having fun.

Actually time gets a bit confusing after chemo. I had my last chemo infusion March 31st 2010. When I realized the date the other day, I was shocked. It certainly didn't feel like a whole year since I sat in that infusion room and watched and waited as the toxic yet healing drugs were poured into my body. I was stunned at how swiftly time was passing.

Then I remembered it hadn't been a year since I was in the infusion room - I finished herceptin in December, so it's really been only four months.

Whew.

For those of you in the midst of it, who wonder if they will ever be the same, the answer is yes. I would say I am 98% of normal. I have tamoxifen pains (can't wear my beloved heels often due to aching hips), and I have shoulder (post-surgery) problems. But, the things that chemo did to me: drained my energy, made me pale and tired, killed off my blood cells, made my hands and feet tingle, made me bald - those are gone. My energy is restored and the same as it ever was. My hair is lush again, if a different color.

My recovery was brought to the forefront when my son participated in the Science Olympiad Regionals, this time as a freshman in high school. Last year, I wrote about attending the event ten days before my last chemo, and I discussed how very hard it was on me. I'll never forget that day for the physical difficulties it presented. This year was radically different. Not only did i show up at 7:00 a.m, but I was the volunteer coordiator, working in the back room, checking other volunteers and teams in, grading tests, running errands for the regional director. I did get out and watch events and take some photos, but I was working, and not feeling any different than anybody else.  I was not enduring the event, I was enjoying it.

What a difference a year makes.

One thing that has not recovered are my nails. They used to grow long and strong, now they are weak and brittle. They are so thin that I can feel cold and heat on my nailbed through them. The other lingering side effect is some minor short-term memory loss. To be fair, my memory was never very good. I was always terrible at learning names, for example. If you meet me, I will not remember your name, and I'm very sorry about that - it's no reflection on you or your importance in my life. I just suck at names and have tried all the tricks, even using mnemonics, to no avail. I call all the kids at my school "hun" which is kind of obnoxious, and it makes me sound like a 50s-era diner waitress, but I can't possibly remember 1500 names.

"Oh sorry, chemo brain!" has become my excuse mantra. Of course, it shocks the people who didn't know I'd had chemo but so be it. A good excuse is hard to come by.

Post-chemo, there are holes in my memory aside from what was normal for me.

You know how when you are a kid, you play with that blind spot in your vision? You look at two letters on a page and cover one eye and focus on one letter and move back until the other one disappears? My memory has been like that - move the wrong way and hit a blind spot. Somebody would tell me something and it'd be gone in an instant. I would be sitting at my desk and say to myself "I need to send an email to XX about XX" and in the time it took for my hands to hit the keyboard, I would forget what I was going to do.

We all have those moments - I had them before chemo. It was the number and intensity of them that was disturbing.

It used to happen 30 times a day - which is a guess, I couldn't possibly count them. It seemed to happen all day long. I refused to allow it to frustrate me. I kept pen and paper with me for times my boss asked me to do something - I didn't trust myself to walk the six feet back to my desk and remember. For those instant "I need to do some......thing....whaaaa????" moments, I just told myself that this was temporary. Don't worry. It'll come back.

And, it seems to have. Those moments are fewer and farther between now. Now what is left are the things I always struggled with - names, directions, places. I have some problems with word retrieval, including names of people I know well. I call my children by each other's name, for example. Not only that, sometimes a sentence is hard to get out and I stumble. It's a bit worse now but I have my coping mechanisms (GPS, technology, pens and paper) and am doing just fine, thank you.

Time is funny. When you are going through chemo, it's just head down, one foot in front of the other and it seems endless. Those months stretch out. You wonder and hope you'll be the same at the end. And, now that it has been a year, I can hardly believe it. It seems like yesterday..

 I'm here to tell you that you can be normal again.

 I am.

At least, as normal as I ever was.

My hair one year post chemo. Yes, I cut it!

~~~~~
In the coming days I will be remodeling the blog and adding some breast cancer videos. Please let me know what you think of them and if you find them helpful.