Sunday, April 29, 2007

THE LIST

This has come up again and again... and more keep being added to my personal list. Someone requested I start THE LIST here and everyone could make their own additions if they want to.

LIST OF PROCEDURES NEVER TO HAVE AGAIN (if at all possible)

1. Wire Localization.
I don't care how much Lidocaine they use, it is still the equivalent of jamming a ball point pen into your breast. Topping it off with a dixie cup doesn't help either.


2. Core Biopsies of the Areola.
Need I say more? This last time I had 17 samples taken. Camp Gitmo could use the film of that procedure from hell and get confessions in a nano-second.


3. Port Insertion
With apologies to my wonderful, talented, and handsome surgeon... this one made the list. It doesn't hurt everyone. I just got lucky I suppose!


4. "Disco-gram"
No Saturday Night Fever here... in this test they insert electric probes into your spine to find what nerve is causing your back pain. When you are in excruciating pain, then they know which one has to be worked on. The pain lasts only about 6 months.


5. Any "Oscopy"
It doesn't matter which end or what it is for, they are all bad. From the clean outs to the tubing... no mas!!!


6. Thyroid Biopsy
All you need is an orange jumpsuit- lay your head back and let the procedure begin- several "samples" taken several times from your exposed throat

7. Drinkable Plaster
Any procedure where you must chug down two gallons of lemon flavored plaster should be made illegal. Immediately. The radiation place I frequent used to have handy plants in the waiting room...they were very well "watered" by me when the staff was not looking. Unfortunately, however, the plants have since died and have not been replaced. Apparently, I was not the only one involved in this practice.

8. Hold your Breath
As if we can do anything but when the mammogram machine is turning our c cups into a short stack. However, this procedure has saved my life. So, keep it on your list.

9. From George- Turn your Head and Cough
We have been informed that a prostate exam is no day at the beach, so we will add it here and take George's word for it!

10. You Wanna Biopsy What? From Val
Uterine Biopsy. Just seeing the two words together makes me want to add it to the list. Thanks to Val for this warning!!

11. If You Can't Spell It- Don't Have It Done!
Dear Kelly has endured not one but TWO thoracentesis procedures to drain her lung. I feel woozy just typing the words! Kelly! YOU ARE BRAVE! GET DRUGS!

12. Dana's Blue Dye Nightmare
Smurf this! Injecting radioactive blue dye into your nipple before surgery--- while you are still WIDE AWAKE. Are they kidding??? Thanks for the head's up, Dana!

Catch words to avoid:
When a doctor tells you this and and what he really means...

"A little pressure" = Crushing pain
"It SHOULDN'T HURT" = But damn, it always does
"Little pinch" = Lethal burning
"I have never seen that before" = WTH? Now what do I do?
"Most patients have no problem" = ...if they survive it....
"Bee Sting" = My Ass!

OK- your turn!

Tuesday, April 24, 2007

My Friend, Red

We go about this the wrong way. We hear the word cancer and think that is the worst thing we could ever hear. Until we hear the word chemo. That actually has a worse rap that cancer does.

Five years ago, I was convinced my oncologist was trying to murder me...drip by drip....

I looked at my chemo as the death sentence and cancer didn't seem so bad compared to it. It doesn't help that cancer doesn't make you feel sick. In fact, with the exception of a lump or two, you feel fine. Until they start pumping toxic chemicals into your body. THEN you feel sick. OY do you feel sick! At least, five years ago you did. That was before Emmend and Aloxi and all the other agents that have been developed by chemo's new PR firm. They are working hard to improve its image. They have a long way to go - too much bad press to overcome.

In these five years since then, however, I have grown to hate cancer. I hate it with such an intensity that it burns in me. I have lost too many friends to it. I have seen young kids go without mothers because of it. I have seen the suffering. And I want revenge. I want to make cancer hurt as much as it has hurt those I love.

With that knowledge and basal gut instinct, how in hell could I hate chemo? Chemo is cancer's worst enemy. It is what I can use to get "revenge." It will disguise itself in my blood stream, slip between the DNA and take out each and every one of the Beast's terror cells.

I love chemo.

Tomorrow I start Adriamycin. It is an anthracycline type chemotherapeutic drug and it is one of the strongest made. It is also red in color. So it has acquired names from cancer patent's over the years such as, "the red devil", "hi-test Hawaiian punch", etc. It has many side effects, and I may get all of them. Tomorrow at this time I may be overcome by them. But I will still love it. Because no matter how bad I feel, the cancer will be feeling worse- because it is DEAD.

Me and my friend, Red, are going to kick some cancer ass tomorrow. We intend on winning.

Cancer hates that.

Saturday, April 21, 2007

Take me Out to the Ball Game

The sun rose this morning and brought with it the first true Spring day of the year. The air was light and full of the promise of the coming months ahead. The sky a deep blue that made the trees stand out in almost a bas relief against it. The flowers are opening and trees are budding. Even the magnolias. There were Wordsworth's "host of golden daffodils" and Whitman's "sea was whispering: me" from the little beach I look upon.

On a normal day like today I would have been covered knee deep in mud in gardening glory. I would only stop when it got dark out. But those days are on hold for a bit with my surgical limitations and discomfort... which unfortunately made me think of T.S. Eliot uttering that "April is the cruelest month." Indeed. It is cruel that something like cancer can rob us of entire seasons. Yet, I know that in order to have many more Springs I must give up at least PART of this one. I am going to fight to be as active as I possibly can. I am not giving the Beast an inch this time.

The first time I was diagnosed I gave in to it and suffered every bad side effect and didn't get out from under it, even on the "good" days. Not this time. I love life so much more now. I see all that I missed for those six months of torture I went through five years ago. I have learned to live every moment of every day and savor it. I will be damned if Cancer is going to take away my favorite time of year.

Today I was supposed to be home resting because of the surgical problems I am having with the new port they put in. On a day like today? I could "rest" and have some fun too.

And I did.

I went to a baseball game. Not any baseball team either, it was my hometown Little League and my buddy Scott who lives across the street was playing. Do you think I would miss that? So I worked my way up the bleachers and "rested" and cheered his team on. I was surrounded by young mothers who were brimming with good health and days scheduled to the nano-second between each of their kid's games. Everyone was so happy and so energetic, as if there was no place else on earth to be at this very moment in time. The ball field overlooks the bay and it was a great game as far as Little League games go.

Five years ago, I would have become maudlin and felt sorry for myself. I would have looked at the children and been sad I don't have any. I would have looked at the mothers and thought how can they be so happy- don't they know the Beast is coming for them too??? But I didn't. In fact, I noticed that I wasn't having a pity party at all. Somehow I had crossed over and joined their party- the young and the healthy and the happy! I will be healthy again and I am still young and I can honestly say, even in the midst of all this Cancerland nonsense, I am happy.

So this time, which by the way I intend on being the last time I ever go through this, I am doing it as a visitor. I will visit Cancerland from the other side- the side where the sky is blue, the kids are muddy and smiling, the moms have long, pretty hair and summer will be in full bloom in my little seaside town. There will be temporary mandatory visits for chemotherapy, but they are just that: temporary.

I learned this from last time. Chemo is not forever. It ends. Your life is handed back to you. I am just not going to hand over all of my life to treatments- just the parts that the Beast may have touched. But that is all. Life is too short. Life is too precious to waste a single moment of. And I won't.

Am I nervous to start chemo next week? You bet. I heard a phrase recently though. I think it may be a book title, I am not sure. It is,

"Feel the fear- then do it anyway"


And that is what I intend on doing.

Summer is almost here! I don't have time for no stinkin cancer! I have flowers to plant, baseball games to watch, barbecues to burn. Plus, Scott's team won! Then NEED me in the bleachers for luck! There are miles to drive with the top down and the radio on. There are beaches to walk and sea glass to find. There are my friends and family to enjoy. No. The BEAST is the one who will be making an exit this summer.


"I'm pleased and happy to repeat the news that we have, in fact, caught and killed a large predator that supposedly injured some bathers. But, as you see, it's a beautiful day, the beaches are open and people are having a wonderful time."
-Mayor Vaughn of "Amity Island"


I plan on doing both, Mr. Mayor! And this time I plan on getting a bigger boat...

http://www.youtube.com/watch?v=rrLUIZf9EUo

Thursday, April 19, 2007

Post-Port

As an update to my port insertion...

It hurts. Not just an achy pain, but a real pain that is so bad I cannot even move my arm.
And it is right where my bra strap is so I can't have the strap up on that side.
The doctor is seeing me late this evening to check on it.

Ya know... The Beast is really starting to tick me off.

Time for me to make another Christmas Story analogy.

Picture me as Ralphie and the Beast as Skut Farkus.

(cut and paste and put in browser window if link won't link)

http://www.youtube.com/watch?v=07geXDHjpYU&mode=related&search=

Tuesday, April 17, 2007

Port of Call

Tomorrow I get my port. To those of you who haven't traveled the cancer road, a port is short for a "medi-port" or a "portacatheter". Still fuzzy? I will start again.

Tomorrow my breast surgeon is sticking a long plastic tube somewhere in my chest into a major artery so I can get chemo administered through it directly to my heart. It is meant to protect our arm veins from the burning, toxic effects of the chemo drugs. Oh yes! The veins need to be protected but it is OK for the rest of us to get burning, toxic chemicals pumped into us. Do I have to ask it again?
WHO THINKS OF THESE THINGS?!

Do you remember Star Trek? The real one, not the cheap knock-offs. Back when William Shatner was hot. (Yes, there was a time when people actually thought that.) On Star Trek, Dr. McCoy would scan his medical device over someone and heal them with vibration and dilithium crystal power and even the dead would come back to life. It was what modern medicine was supposed to be like on the final frontier.

On one episode the crew beamed down to planet earth in present day time. Bones (you could call him Bones if you knew him really well) was looking at earth's medical equipment and looking at what medicine was like in the 20th century and exclaimed, "THIS IS BARBARIC!" He was shocked at how human beings were tortured to be "cured."

Oh, Bones, you got that right.

Unfortunately this is not Star Date 9203, and Bones isn't my Primary Care Physician... I hear he doesn't take Oxford anyway. As a result, I am to report to the ambulatory care center of the hospital at 9 am. It is supposed to be a one day procedure. In and out.

Hopefully.

You see, my breast surgeon took the time to tell me of the risks involved and should something go wrong I might need to be admitted. I am more worried about being admitted than his hand slipping. Did I mention I broke out of the hospital less than 12 hours after my 8 hour bilateral mastectomy with reconstruction?? I really mean it when I say I hate hospitals. I trust my breast surgeon and his skill, but I really hate hospitals!

I also have a question about hospitals: What's with the hats? Have you ever noticed the absolute fixation hospitals have with head wear?? All the nurses have hats on. Not pretty, starched white index card things, but full sized hats. A baby is less than a minute old and before they slap his butt they slap a hat on him. All the docs wear them. And they will force me to put on a blue paper shower cap before I take my coat off. Now some people look good in paper shower caps. I am not one of them. So far though, I have taken note that my surgeons do look pretty good in them so maybe it is a fashion thing - we like shoes - they are into hats. They must have them made at a special surgical custom shower cap joint exclusively for surgeons so they can always look good.

Anyway, back to my "port". It wouldn't bother me so much if it was hidden deep in my chest and was my little secret from the world. He WILL bury it deep in my chest but the toxic docs- um - the chemo folks, I mean, will need to access it. How do they do this you may ask??? Well, the doc who invented ports must have been a big fan of Peter Boyle in Young Frankenstein. You see, right smack dab under my collar bone will be a knob. Bigger than a doorbell but smaller than a doorknob. Attractive, no? People will think I am carrying my own personal satellite dish. To make it even more fun, it will be covered with my skin. So it will appear like I have a odd growth.

And all this to help the toxic chemicals reach my heart faster.

I am having an epiphany here...

I have been walking around with a stomach ache for three days. I think I just figured out why. I am so not into this. No wonder I am feeling like I don't know whether to faint or throw up.

But do it I must. And I will. Tomorrow, at nine.

However, my surgeon has a little surprise waiting for him tomorrow. I am bringing three of my favorite summer tops, the top to my favorite bikini and a pen. I will try them all on and mark where their straps are and he can use that for his "guide". Isn't that a brilliant idea?

I have a feeling he may not accept my participation in this serious medical procedure. But my former breast surgeon got quite used to me. Every time I had to go in for a biopsy I would write "B9" on the spot they were going to be biopsying. One time I wrote on the unaffected breast " It is the other one."

Hey, I am in this alone. A girl has to do what a girl has to do!

Monday, April 16, 2007

Breast Cancer and the Single Girl

Do you have any idea what a hit your single life takes when you get cancer? Breast cancer ESPECIALLY?

Think about it. As women preparing for a date with the opposite sex, we tend to pull out all the stops:
First, what will we wear? What will show off the best of the best and hide the parts that have had, well, happier moments shall we say...?
Then comes the hair. Hair is an accessory, a shield and can be a weapon of mass destruction if styled just the right way.

But now you are diagnosed with cancer. And the doctors are going to start to remove things from you one by one...
They actually try to make us men!
They remove our breasts.
They remove our ovaries or put us into premature menopause.
And they make our hair fall out.
Basically, we become Julie Andrews in "Victor/Victoria",
"You mean you want me to be a woman who is a man dressed to look like a woman??"
Yup.
WHO THOUGHT THIS STUFF UP???

Before we get too desperate here, though, let us not forget the bionic part of the equation: Plastic surgeons can give our breasts a new life. This I know for a fact. My "new" ones look better than my "old" ones and I am not even done with reconstruction yet. (I adore my plastic surgeon. He is a genius and an artist.)

I have also discovered that one need not look like Phyllis Diller on a bad wig day. They actually can make a wig, made of human hair that looks exactly like your own. I mean EXACTLY. No one can tell it is a wig. And a wig is temporary because the hair WILL return.

The ovary business? Premature menopause is no picnic from what I hear... but think of it this way, you are never chilly again. You can wear a strappy dress that shows off your new breasts and fling your gorgeous human hair wig and not even shiver. True, you might be sweating and breathing a bit heavily, but a date may think you are positively longing for him... or have malaria. (Order a gin and tonic and tell him you need the quinine if you aren't attracted to him.)

I had my first cancer five years ago. I met someone after chemo. I was overweight because I gained 18 pounds of chemoweight. I had absolutely no self esteem and considered myself a cancer patient and not a woman any more. He didn't see that. He actually liked ME. I thought he was heaven sent. So much so I ignored his many flaws. And there were many. I thought he was the best I could do. But then I started to lose the chemoweight and come back to the person I used to be. It was then I realized the old me would never let a man get away with what I let this person get away with and I ended it. I really felt good about myself that day. It meant I must be getting better if I was willing to toss a boyfriend away when I was a breast cancer survivor and according to the world: washed up.

That is so not true!

We survivors have a lot to offer a new man. He just has to be the right kind. Someone who isn't afraid of a woman who has more courage and strength than anyone he has ever known. Someone who will drop everything, including a date with him, if a sister needs her, someone who has seen life from both sides and lives every moment.

What we need is a real man. Only the real thing will do after we have battled the Beast and won. Men who aren't afraid. Men who appreciate who we are under the hair and make-up. Men who you really can only find today on Turner Movie Classics.

Sadly, they don't seem to make too many of the old models anymore so you have to look hard to weed out the lemons. Some of our poor married sisters are stuck with lemons. You know who I mean. The kind who bail when things get a little rough. I cannot tell you how many women I know who have had their husbands leave them while they were in treatment. Can you ever imagine Cary Grant doing that? He would drive you to your infusions in a tuxedo for pete's sake. They are out there. Watch and listen carefully and you will separate the men from the boys.

Since my first diagnosis I have lost even more weight by cutting down all fats. I work out and am happy when I look in the mirror. My hair is nice and long and I feel like I look better now than I did before I had cancer. So what do I do with all this newfound joy and glee?
I get re-diagnosed.
THIS was not in my plan.
It gets better.
I actually found one. I met a real man. Amazing but true. I am telling you- keep your eyes open and be attentive- they are among us. I am attracted to this man and I think he may not be frightened off by the Warrior Angel that dwells in all us survivors. Isn't that perfect? I met him at the worst possible time. He is intriguing, intelligent, and a rare find. I do think he is attracted to me as well. Normally I would test this theory but I am letting the moment pass because I cannot move forward because my dance card is a bit full.

I will be starting chemo next week. In three weeks I will lose my hair. I have had my breasts removed - but they are a work in progress. I will be in chemo for six months. What is that old saying? Every time my ship comes in I am at the airport? It feels a bit like that. So this man will disappear back into real man land and find Myrna Loy or one of you. Granted, it was just at the attraction stage, nothing more. But I do have an active imagination...

But one thing I am not imagining is that THIS time, cancer is really getting in the way of my life. Life threatening? Oh yeah, that too. But that is why I am doing the chemo and that is why it is so VERY inconvenient right now.

Maybe after this is all over I will be feeling my invincible wonder woman self once again, someday.

But why wait? Why disintegrate into sloth and self pity just because I have an E ticket to Cancerland this summer? I did that LAST time. And I was miserable and had every side effect known to man.

So I made a decision. I am not having chemo. I am beginning boot camp. I am buying a new elliptical and will train on it every day that I can, with the exception of chemo days. I intend on NOT gaining weight from chemo. Rather, I am going to work on those places that have had happier moments and make the rest of me look and feel its absolute best. ( I have to make my body catch up to my new 18 year old breasts anyway!)

But seriously, maybe we have all been looking at chemo the wrong way. I can look at it like a prison sentence that is robbing me of a summer. Actually that is exactly how I HAVE looked at it. But no. This must stop now. Immediately! We women are beautiful. We should look at it like boot camp. It will suck, it will hurt, it will make us tired, but when it is all over we are buff fighting machines with the short haircuts to prove it.

So that is how THIS single woman is doing Round Two this time. I am challenging myself to not only make myself better on the inside- but on the outside as well.

I will keep you posted on my progress...

And should that elusive real man still flirt with me in six months? Well then, we will know I am on to something then won't we?

As one of my heroes once said,

"Never give in, never give in, never, never, never, never. Never yield to force; never yield to the apparently overwhelming might of the enemy."


No Mr. Churchill, won't give in. Not now. Not ever.

Thursday, April 12, 2007

Wake Up Stupid!

To those who know me this will come as no surprise... but for those who do not, I have a few idiosyncrasies. These include a fondness for Phish Food, the need to watch A Christmas Story at least 10 times during the holidays, an obsession for hydrangeas and an absolute and total disdain, distrust and loathing of breast cancer statistics.

Phish Food aside, and hydrangeas trying to bud in sub freezing Spring weather, the other two converged in a very strange way this week.

On Tuesday I met with the "new" oncologist. I was to be meeting her in a "state of the art, Zen-like atmosphere" of a new cancer center- at least that is how the brochure described it. If Zen and the Delta Terminal at Laguardia Airport meet- this is the place. Imagine walking in to a facility, where you will be discussing a chemotherapy regimen that you will receive there for the next four months and discovering you are just one of the masses of people waiting in an airline terminal before take off. Is that why they designed it like that?? Chemo for people who are terminal and ready to take off???

I checked in at the mammoth desk and was asked for photo id. This is a new request to me, was I boarding a plane and the TSA needed proof of residency? Or here to meet a doctor about my breast cancer? I was told to sit in a waiting area and over the loud speaker people's names were announced: "Jack Schwartz report to the front desk", "Millie Ohara report to the lab"... so much for the HIPPA laws of patient privacy.

I was "called to report" and eventually met my new oncologist. She was attractive, kind, and seemed very intelligent. An upfront kind of gal. You know, the tell it like it is type, along the lines of: "You will die of this cancer before you have a heart attack. This cancer will come back to your intestines and your ovaries and ovarian cancer death is a horrible way to die."

Welcome to state of the art cancer care! Where do I sign?

In fairness, she also hugged me four times. But after her "happy" news this only made me more frightened... four hugs? Would I live long enough to survive the trip back through the lobby and out to the parking lot? JUST HOW BAD WAS I???

According to her, I was toast.

THEN she started quoting stats. I do not believe in stats. I hate stats. But I was believing them. I was so upset by my grim prognosis that I sat there and swallowed hook, line and sinker every bad tidbit she threw at me. What had happened to my mind??? I know the stats she quoted were antiquated and not accurate and had NO BEARING on my particular cancer diagnosis! But I was asleep! Lulled into catatonia by the realization that I will not be buying green bananas ever again!

I wanted to wake up. I NEEDED to wake up. But I couldn't.

I left there feeling WORSE than I have ever felt. Worse than any cancer diagnosis or any piece of bad news I had every received. Thanks to state of the art medical care- Long Island Style.

I went home and was still asleep. Still believing the stats. It was horrible.

Finally, the next morning I woke up for real. And then I found another doctor.

My new doctor? He is not in an over sized cancer center that is impersonal right down to fake plants in the "Zen" garden devoid of all human/patient/doctor contact. He has a nice office. He has a friendly staff. And, he is quietly just the best oncologist around. He doesn't quote stats- instead he runs studies on new therapies and treatments that have blown away all the old stats because of his OWN research that has women living - not dying from cancer.

There were no loud speakers telling me where to go. Instead, he came out into the waiting room to introduce himself to me. He is smart, on top of every new protocol and he is going to be the one to treat me so I can WIN this battle.

The moral? I guess if you are new at this please remember to GET A SECOND OPINION - it could save your life and your sanity. And WAKE UP when they barrage you with stats that are meaningless. Remember your wish and prayer: you are coming to them to get your life back. You are not there to hear about all the ways you are going to die.

Which leads me to A Christmas Story.

All Ralphie wanted for Christmas was a Red Ryder BB gun. He tried everything, but every where he turned he was told no and that he will shoot his eye out. There seemed to be no hope. Until he realized that SANTA could deliver the dream. All he had to to was ASK SANTA! But when he meets Santa in a giant department store with hundreds of other kids he is so shook up he FORGETS he wants a Red Ryder BB gun! He has to wake up! He is blowing his only chance! It is now or never!

That can happen with your oncologist choice too. You get so shook up you forget what you want- TO LIVE.

Stop yourself and wake up. I am so glad I did!

And for those who need A Christmas Story refresher course, here is the scene:
www.youtube.com/watch?v=Y3w8k1ZzCa0

PS- I am the proud owner of Red Ryder

Thursday, April 5, 2007

Time to Begin the Beguine

Begin the Beguine -- oh what a wonderful Cole Porter song that is. Of course I love all his music. I have had that particular tune stuck in my head lately as I prepare to meet my new oncologist and discuss beginning chemo - AGAIN.

The first time I had chemo I swore I would never do it again, and that was after each treatment. But, somehow, I managed to pull myself together three weeks later and subject myself to it again. I did this dance for six months. Everyone is aware of the myriad of side effects chemotherapy has on a person, but they always leave out the most important side effect: It Works.

It worked for me. The cancer I have now has nothing to do with the first cancer I had, so what I did five years ago obviously made a difference. I have to keep reminding myself of this fact because I am dreading going through it again. I have to quell the anxiety by remembering that it DOES work.

We have to be nimble with cancer. We have to stay two steps ahead of it at all times. It is a wild dance at times...one that can make you dizzy and weak, hot and sweaty, battered and bruised, but in the end, one that leaves you with a dance card that has no room for the Beast and that means you have won.

If you look up "beguine" in the dictionary it has two meanings, which is why I keep humming the song. One meaning is "wild dance" based on a Latin dance, and the other is from the French with a Catholic origin of "sisterhood". Amazing, isn't it?

So here we are: a sisterhood in a wild dance to beat the Beast at its own game. Did Cole write that song for us? Did he know how we feel when we as sisters have to dance this "wild dance" in order to get our lives back? Did he write it to help us take the plunge into chemo-hell because it is worth all the pain and suffering so we can be our healthy selves again? Did he know that doing chemo puts everything on hold in our lives and he wanted to remind us that those embers would soon ignite again once we were well?

...Till clouds came along to disperse the joys we had tasted,
And now when I hear people curse the chance that was wasted,
I know but too well what they mean;
So let them begin the beguine

Let the love that was once a fire remain an ember;
Let it sleep like the dead desire I only remember
When they begin the beguine.

Oh yes, let them begin the beguine, make them play
Till the stars that were there before return above you,
Till you whisper to me once more,
Darling, I love you!
And we suddenly know what heaven we're in,
When they begin the beguine

Whatever you meant Mr. Porter, I thank you. I will begin the beguine again. Because I want to dance among the stars and feel the cool breezes against my skin. I want to wake up strong and clean and free of the Beast and can dance all the dances this beautiful life has in store for me.