Tuesday, December 18, 2007
I am getting mapped for radiation tomorrow.
In my mind stage three means nothing but a number.
There is no way on earth I could have taken anything better or for longer than I did. I had nine months of adriamycin, abraxane, cytoxan and xeloda. Reminds me of Butch Cassidy and the Sundance Kid when they blew up the safe in the train and everything around it was blown to smithereens....
"Think you used enough dynamite there Butch?"
So I left a message with my breast surgeon that I want my port out.
This was met with a trepedatious, "Well, we have to see what the oncologist says."
This means, well, we don't think you are going to be NED for very long so why have another surgery???
So yesterday I sat down across from my onc and point blank asked him:
"Is there anything more we can do?"
His response was "NO- you had more than 100% of total treatment. The rest will be taken care of with hormonals."
Remember, this is a man who has been "shooting for a cure" from day one. Even though he cannot tell me we accomplished that, and won't know until about a year and half to two years from now.
And then I asked him, "Can I have my port out?"
Without blinking an eye he said "YES."
Am I whistling past the graveyard? Committing a major kinnehura? Tempting fate?
I want this damn thing out. I am tired of walking around like I am wired for Radio Free Europe transmissions.
If the day comes that I need to get it put back in, so be it.
But until then- take the goddamn thing out- move forward and don't look back.
Saturday, December 15, 2007
I've lost a friend today. We all have. For Lisa was a friend like no other. She was as gentle and kind as anyone could ever be. She was brave and strong and she tried so hard. She fought for so long, with all her heart.I cannot fathom how this has happened to her, to her beloved Kirk and her beautiful children who she worried so much about leaving behind.
Lisa said she would do anything - any treatment they could give her - if it meant she could be their mom longer. And she did.
Lisa, I am going to miss you so much. You did not fail - medicine failed you. No one could have fought harder than you or with such grace and dignity. Lauren, Kyra and Jake will be OK. You did a wonderful job raising them and Kirk is such a dear and caring father, he will make sure your legacy of love, faith and generosity of the heart lives on in them.
Thank you for the kindness, the laughter and the love you showed me. Thank you for being so supportive to so many. Thank you for being my friend. We will meet again and when that day comes, I will hug you and tell you how very much you meant to all of us here on earth.
I will never forget you my sweet friend.
Do not stand at my grave and weep.
I am not there, I do not sleep.
I am a thousand winds that blow.
I am the diamond glint on snow.
I am the sunlight on ripened grain.
I am the gentle autumn rain.
When you wake in the morning hush,
I am the swift, uplifting rush
Of quiet birds in circling flight.
I am the soft starlight at night.
I am the song that will never end.
I am the love of family and friend.
I am the child who has come to rest
In the arms of the Father who knows him best.
When you see the sunset fair,
I am the scented evening air.
I am the joy of a task well done.
I am the glow of the setting sun.
Do not stand at my grave and weep.
I am not there, I do not sleep.
Do not stand at my grave and cry.
I am not there, I did not die!
Monday, December 10, 2007
Now, Voyager, sail thou forth, to seek and find.
The untold want. A desire to be free, to be myself again. To be able to measure my days in what unfolds before me and not be controlled by outside circumstances. A want of a life and land that was never granted me because I was singled out to take a different road, a road where there is no compass and once on it there seems to be no end.
But there is an end. After nine months I finally reached it. And before me lies all the beauty this world has to offer. I have paid my ticket of admission to be among the living again. And live is what I intend to do.
I know that one day I will be on that dark passage again and I will long for sunlight and the smell of the new moon as it rises in the sky.... but not now. Not yet. Because today I stepped into the sunlight and new moon awaits me. I am not looking back nor will I look any farther than I need to in order to maneuver my vessel towards the open sea.
After nine long months, chemo is over. Finished. Finally completed.
The world is waiting and I hear its call...."Now Voyager, sail thy forth to seek and find...."
I am on my way. At long last.
Saturday, December 1, 2007
We have lost many sisters these past few months, and even more have had progression of disease and worsening of their metastasis and there seems to be a steady tide beating away at the beach head of any ground our doctors have conquered.
While we are in remission or stable or even cured, are we ever safe? Can we ever take a moment and enjoy freedom from the Beast's grasp? It seems like every time we exhale and think we are safe, someone else is given horrid news. How and where can we hide from the pain and fear and yet still be there for our sisters who need us?
Running a breast cancer website, message forum, blog, and belonging to two other breast cancer websites, being in chemotherapy and writing for breast cancer magazines, I have felt inundated lately. I feel every where I turn I am in cancer in some way, shape or form. Worrying about my friends with advanced disease though gives me the drive to continue and go on and keep fighting and finding ways to help smooth rough patches of road, ease a fearful mind, hold a trembling hand and hug someone who just needs it.
When I was healthy, before cancer, I had no idea of this world I am living in now. It is large and getting larger every moment. We all seem to know one another. That goes with the territory and it is one of the nicer parts of this world. That tacit understanding between two people which needs no words at all. We just know. Know what each other is thinking, feeling, and fearing.
That is why I know many readers of this blog are afraid now because we have the same friends and we are all sad for those who have passed and scared for those who are facing difficult times ahead.
Should we, the orphans of this cancer storm, indeed find a place to hide, for even just a moment?
We could. But reality will be waiting for us when we come out- come out from where ever we were....
Or should we instead realize that we all have today. And today should not be spent mourning our diagnoses and the changes that have come with them. It happened. We were diagnosed with breast cancer. But is that all we are now? No. There is so much more to life, so much more to us than to spend the rest of our todays thinking of them as yesterdays.
We may have given over a part of ourselves to cancer, but we have not relinquished control over our lives. We still decide how we choose to spend our days and what is important, and what we want to remember.
In fair weather, when things are going well, we need not hide because we deserve to enjoy every moment of every day when things are going well. We should resist the temptation to feel guilty that we are well when one of our beloved friends is struggling. We can take our energy and send it on to her in hopes that she will gain strength from us.
We can't hide from the Beast or bad news or reality. But we can control how we spend each precious moment of every day we have here on earth. That is something the Beast cannot touch.
Let the storms rage. We have each other. We have today. We will be here for those who need us always.
We owe it to ourselves to live the best lives possible while we can.
We owe it to all who went before us too. For they would want nothing less from us.
And I owe it to those who give me the greatest joy in life. My twin nephews see me as just their aunt- not the cancer patient... and that is the way it should be. Because I was their aunt first and will always be. The patient is only a passing thing and we will move on to bigger and better things. Here we are at Thanksgiving, no hiding here.
Thursday, November 29, 2007
Lord, hear our prayer...
Trials Underway For Breast Cancer Vaccine
BALTIMORE (WJZ) ―
The cervical cancer vaccine advanced women's medicine and researchers at Johns Hopkins are working toward the same goal with breast cancer.
Clinical trials are underway right now for a vaccine that doctors hope will one day wipe out the killer disease. They tell Healthwatch reporter Kellye Lynn, that the first phase of the trials look promising.
"We have designed a vaccine from cancer cells themselves," explains
Susan Marangi is one of nearly 50 women taking part in
She was first diagnosed with stage one breast cancer 19 years ago. She's had chemotherapy, surgery, and radiation, none of which worked long term.
"It finally became extremely clear to me that I was going to die," she tells WJZ's
Marangi was cancer free for 11 years. Now, she's terminal, with stage four breast cancer and she's giving her body up for research.
"Knowing that the current treatment was only going to be 20 or 30 percent effective, it's not in my makeup to wait for something to happen."
As part of the clinical trials, Marangi is given the vaccine to help the body defeat the cancer. Dr. Emens says it works much like the recently approved cervical cancer vaccine.
"The problem with cancer is because it comes from within you, our immune system says, 'So what. I have seen this before.' Our idea is to re-educate the immune system to recognize tumor cells more like an infection, like a cold virus, and to seek out and to destroy cancer."
The vaccine is injected under the skin and is given with low doses of chemotherapy. Side effects are minimal but the research is in the early stages and years away from hitting the market. Still, Dr. Emens says the potential is staggering.
"I believe eventually we can, prevent the disease from happening in the first place."
Susan Marangi believes if the vaccine doesn't help her, it will save somebody.
"When they first came out with the polio vaccine, somebody had to be the first person it worked on," she tells WJZ. "I don't know if I will be that person, but I am sure somebody will be that first person that this particular vaccine works on."
(© MMVII, CBS Broadcasting Inc. All Rights Reserved.)
Saturday, November 24, 2007
Readers of this blog know our friend Jacque. She posted here often and was a kind and loving support to anyone she came into contact with. Whether here or on breastcancer.org, if you had a fear, worry or question she would be there for you. She may not have known the answer, but she let you know she was holding your hand and she just simply understood.
Jacque was very dear to me and to so many others. Her death has come as such a shock. Just last week she was posting about buying new shoes and what her plans were for Thanksgiving and then on Thanksgiving morning she left this earth.
I find it hard to be thankful for anything when I think about Jacque no longer being with us. But I do know she would want me to find something... so I will be thankful that I had a chance to meet her. If not for breast cancer and the internet how else could a girl from New York meet a lovely mom from Nebraska? I am thankful for our blogs because we were able to share so much. I am thankful for breastcancer.org because that is how I first met this gentle, loving soul.
I am thankful that for the brief time I knew her, she made me feel like we had been friends forever.
Matt, Greg and Mark, she loved each of you so much and felt your love deeply. Thank you for being such a wonderful family and for including those of us here in cyberspace in the latest developments and arrangements.
If you knew how many people loved your mom and wife and we could somehow channel that love into a huge hug, you would feel the warmth and comfort that Jacque gave to each of us every day.
I will miss you Jacque. You are a beautiful angel now- I know this because you were a beautiful angel here on earth.
May God bless you all.
with great sadness,
Sunday, November 18, 2007
It is getting to be that time of the year again. And along with the holidays we are once again faced with the question that has plagued an entire generation of kids- What is wrong with the doll on the Island of Misfit Toys?
She has two legs, two arms, two pigtails, a cute face and outfit. She isn't a train with square wheels- or a water pistol that shoots jelly, I mean, come on, we all KNOW why they are there. But the doll?
I would have been happy with that doll if Santa brought her to me. I am sure my main doll, Gigi, would have said there was room enough for her on my twin bed. Lots of kids would want her. Why is she stuck with the mutant toys on that weird island run by a flying lion? Anyone ever ask just how normal it is to have an entire island run by a flying lion??
I feel like that doll inside. I feel there is nothing wrong with me. I think that I should be accepted and loved for who I am. I didn't ask to get a one way ticket to Cancerland. I want Rudolph to grab Yukon Cornelius and Dennis and come save me from this place. In fact, there are a lot of beautiful dolls here banished for no reason. Cancerland doesn't even have a Flying Lion running the joint.
Dolls of the world! Unite! Let us set sail out of Cancerland and reclaim our lives! There is nothing wrong with us inside. And we deserve a chance just like all the others.
This Christmas eve I am going to listen really hard. I will look for the red nose guiding Santa to get me the hell out of here.
Sunday, October 28, 2007
Former First Lady Betty Ford was the first to bring the words "breast cancer" out of a whisper and into the limelight. Because of her brave steps in revealing her illness to the country and the world, other women became aware that they, too, might one day get breast cancer. So word started to spread, the media covered it more openly. Mammograms were discussed as a routine procedure instead of just a test after the fact.
Former First Lady Nancy Reagan also developed breast cancer. This shed more light and more urgency on the problem. The next thing the nation knew a beloved television character added her struggle with breast cancer to the storyline of her hit show. When Miss Ellie of "Dallas" underwent her mastectomy, breast cancer was now in our living rooms.
Breast cancer was no longer being whispered. It was being talked about openly. Betty Rollins wrote "First, You Cry" and it became a national best seller. Nancy Brinker founded the Susan B. Komen Foundation in honor of her sister's courageous fight with breast cancer.
Today, breast cancer screening is the norm. Because of these brave women, it is not hidden in the shadows any longer. In years past, the treatment of breast cancer was brutal. Radical mastectomies were performed while women were undergoing biopsies. They would sign off on a procedure that might alter them profoundly before they even knew if they had cancer. While still under anesthesia, if the frozen tissue sample of the tumor came back from the pathology lab as positive, the surgeon would continue the surgery and perform the radical mastectomy. The way she knew if she had breast cancer was if she woke up to find she was missing a breast.
With the advent of the women's movement and the brave women who stepped forward with their own cancer battles, the face of breast cancer treatment changed forever. We are now partners in our care. We have a voice. We have choices. And we are living longer and surviving this disease because we are screened early.
Mrs. Bush wants this to be the case in the Arab world as well. She recently stated on television that she always felt that the coverings that Arab women wear were somehow closing themselves off to her and the outside world. She said that one woman she spoke with said to her, "I may be covered in black, but inside I am transparent."
Inside those coverings are women just like us. They need us to help them get breast cancer screening done early so they, too, have a fighting chance, just like us.
Most breast cancer that is detected in Arab women is only found when it is late stage and too late for any intervention that will prolong a woman's life. We know better. We know what a difference early detection makes.
There is one thing about this disease that will always hold true, it knows no boundaries. It strikes all colors, races, nationalities and income groups. The best and only chance we have right now is early detection. That should be available to every woman on the planet.
I applaud our First Lady for bringing this to the forefront. And I will find a way to support her cause because we are all sisters in this fight whether we live in Denver or Dubai.
No more secrets. No more shame. No more hiding. No Surrender. Go Laura!
Tuesday, October 23, 2007
I want to tell you about one woman.
I received and email from a woman named Carrie that simply stated, "I am frightened for my sister. She is having a really hard time with chemo. Is there any encouragement that you help me give her?"
And we have been emailing each other ever since.
She got her sister through the darkest depths of her treatment. Even when her sister wanted to just be left alone. They have a beautiful bond. They are sisters and friends and they are wonderful. Every pain Denise felt, Carrie felt. Carrie fought Denise's doctors for her when Denise was too sick to fight them. She made sure she got the right meds and ate something because she was getting so weak from the chemo. Carrie relentlessly thought up ways to cheer her sister up, even if Denise didn't particularly feel like being cheered up, Carrie was going to try, no matter what...
Denise once said, "There is nothing like laying in bed, sick from chemo, and you feel like the devil himself is trying to pull your eyes out of your head and your sister sits on the bed and reads you a poem..."
Those are my girls!
Cancer has touched their family too many times. Carrie has been the cheerleader, information gatherer, support system and prayer warrior for not just her own family, but for all the sisters she met through the breast cancer support forums she frequented to learn ways to help Denise.
She is one of those people who are really angels that try to pretend they are just regular folks. But if you knew Carrie like the Sisterhood knows Carrie, you would have caught a glimpse of her wings from time to time too.
Here is where I just don't get it. It is times like these that I want to say "Hey, God? Are you kidding? Not her. NOT CARRIE."
Unfortunately, it is Carrie's turn. She was diagnosed and she sees the oncologist tomorrow and is most likely going to get a bilateral mastectomy in the near future. It is not fair. It just isn't right.
But, she has been given a great chance to beat the Beast because she found her cancer at an incredibly early stage. And for that, God, I am thankful to you.
The Sisterhood always had Carrie as our civilian ringer out there fighting the good fight for us and praying for us and whether we liked it or not reading us poems... and now she is one of us.
This post is a salute to my friend and my sister. And it is a request too.
Please say a prayer, or send healing white light, or whatever it takes to let the heavens know that we want Carrie to go through this journey as painlessly and as free from worry as she has fought to help us go through ours.
If ever there was a time for Karma, this is it.
Carrie, all of us in our circle of friends love you and are here for you and may all the love you have given come back to you tenfold.
I am also sending Denise a book of poetry. Karma works both ways you know.
Saturday, October 20, 2007
Saturday, October 13, 2007
Breast cancer awareness month and a white hot primary election season heating up. There almost isn't any room for Anna Nicole Smith stories anymore. What do they all have in common? When examined closely, none of them are what they appear to be.
First up, the news from Iowa today. It seems the political candidates are now going door to door to drum up votes. Now I ask you, just who do they think they are sneaking up on? Let's see, there are about 4 SUV's in their motorcades, three buses of press, satellite trucks parked and pointing their huge dishes to report this spontaneous moment, and then the candidates themselves, looking all casual and nonchalant, like a paper boy simply comin' 'round to collect this week's fee.
Second, has anyone noticed the amazing drop in new breast cancer diagnoses this month?* The last time I checked, which would have been around May, the number of women who are diagnosed with breast cancer every year in the US is between 250,000 and 275,000. The mortality was around 40,000 per year. This month, Breast Cancer Awareness Month, the number of newly diagnosed women is being reported as 170,000. Is this a typo? It can't be because I have seen it in at least three different places.
I know there was a decrease in new cases and some felt it was because of women stopping hormone replacement therapy. But some doctors are worried there was a decrease because women have stopped getting as many mammograms as they used to so their cases have not been reported yet. How can that possibly be?
To the outside world that has never been touched by breast cancer, it has become so commonplace now that folks not directly touched by it are desensitized. After all, haven't all those pink things made it not such a big deal anymore? Why get a mammogram? Women don't die from that anymore, right? They get cured. Right?
Sorry to say, NO. Get your mammograms early, by at least age 35. Because breast cancer isn't under control. The Beast is not a nonchalant candidate taking a stroll on a Saturday afternoon dropping by on the off chance you may be home and all it wants to do is ask for your vote.
It comes with crowds. Medical teams who do all sorts of things to you. It comes with satellite dishes. Huge, friggin machines that probe you, zap you and leaves effects that stay long after the visit is over.
If there are people who read this blog who do not have breast cancer and who do believe that the Pink has cured us, stop believing that. If you are a woman, arm yourself now. Because the best chance you are ever going to get is early detection. It is a matter of life and death.
Tonight a dear sister and I were writing emails to each other. She has breast cancer too. We were talking about how many names we have crossed out of our address books and marked them "deceased." It is happening all the time, every day, every hour, every fifteen minutes. We are losing an entire generation of really great women. Women you would have wanted to know. Women who had a lot to offer and who had too much love left to give to be taken away so soon.
In a round about way, what I am trying to say to everyone, but most especially those who have never been touched by this miserable beast from hell, nothing is as it appears. Like the candidate who spontaneously rings your doorbell for the heck of it, PINK has not put an end to this disease.
Please: Give your money to the research labs that are holding the keys that will open the door to our cure. We can't lose any more moms, sisters, daughters, wives, lovers or friends. Don't just buy something pink. Take the money and put it towards a CURE. So pink can become a pretty color again, and not code for a nice way to say ladies are dying.
*UPDATE: The NATIONAL CANCER INSTITUTE RELEASED THE FOLLOWING ON MONDAY, 15 October:
New breast cancer diagnoses are dropping about 3.5 percent a year, a previously reported decline due either to women shunning postmenopausal hormone therapy or to fewer getting mammograms.
Sunday, October 7, 2007
Sure there were days when I would be lazy and I knew it had been awhile since I hit the gym and I would see a girl jogging and feel guilty.
This has all changed.
I am not allowed to use my arms anymore they tell me. If I do it will go on my permanent record or something. I have been told I cannot even mow my own lawn. Imagine! Of course I didn't follow that rule and wound up with a ruptured tissue expander and my punishment was a helpful visit from my dad. The morning of my surgery to replace said ruptured expander, my dad came down to "mow" my lawn. He really didn't want me to have to cut my lawn again. So he cut it short. Really short. By the time we came back home, Tiger Woods was practicing his short game in the back yard. When he cut my lawn on August 27th so I wouldn't have to cut it, I didn't realize he meant I wouldn't have to cut it- ever again.
Next year I will start from scratch. I am hopeful that the rules I am living under will be lifted by then. I cannot be trusted to follow rules. So they better be.
But my forced idleness has made me feel like I am supposed to be sick. I know that being in chemo I am supposed TO BE SICK. But I will be damned if I am going to act like it. However, when they start imposing house arrest on top of it, I get a bit cranky. And I think I should confess something to you all right now. I should get it off my chest for once and for all.
You know those girls who I mentioned jogging by who made me feel guilty I hadn't hit the gym? They aren't disciplined athletes to me anymore. They have become my nemesis. Their perky shiny ponytails bobbing from under their baseball caps and their slender but strong arms keeping pace with their relentless running fills me with disdain. The nerve. Running on the streets like that! Don't they know there are bald people under house arrest with brownfields for front lawns? Have they no shame? What crust!
Yes, I plan on speaking to someone about this. I know. This isn't healthy. But heavens to Betsy! Flash your perfect health someplace else, will ya? There are people trying to finish chemo here... trying to get their eyelashes to grow back... trying to remember what it is like to be perky!
I need someone to share my grief with. So tomorrow at 9 AM I am taking Mr. Fluffy in for a shave. I have had just about enough of him flaunting his fluffy 'do in my face too.
When even your front lawn is bald, you have to do something.
Thursday, September 27, 2007
I have been a visitor of discussion boards since I was first diagnosed. The women I met along the way have helped me survive more than any drug my oncologist could prescribe. The first board I belonged to was a wonderful place. I was taken under the wing by breast cancer veterans who showed me the ropes. They also taught me how to help other women who were just starting their journeys.
The brutal reality of breast cancer hits the sisterhood hard when we lose one of our sisters to the beast. I stopped counting how many we have lost. But each one touches us deeply and a ripple effect of fear and sadness spreads across the miles through every modem and out of all of our hearts.
There have been some very popular girls who were in their last days and they had a big circle of friends who were able to keep us up to date with each new detail and it is so heartbreaking to read about what was happening to both our sister who is struggling and the also pain the friend is enduring being the messenger of such sad news updates.
Sometimes, collections are taken up and flowers are sent from all over and "we" the cyber sisters, show our respect and grief.
There was a girl named Carla who I was very close to in posting and email. Carla was not a "joiner" so to speak. She was always there with an encouraging word or offering a prayer, but she was a more private person and didn't share a lot online. When Carla died, all the sisters expressed their sorrow, but it didn't go beyond that because no one really knew her that well. Except for me and Vicky. Vicky and Carla and I were all diagnosed around the same time. We flew just under the radar in cyberspace. We never had the opportunity to meet the other girls at gatherings so we were a bit on the outside. I remember when Carla died, Vicky emailed me and was upset that there wasn't more being done to honor her memory. I agreed. There were no big arrangements of flowers sent by the group. And she died in close proximity to another sister who was extremely popular and there had been quite a large expression of love sent to her family by the girls who were members of that breast cancer board.
So Vicky and I got together all of Carla's old posts and I sent them to her father. He read some at her memorial service and he was very touched to learn how many lives his daughter had touched.
Vicky said to me, "If I die, make sure I am not forgotten like they forgot about Carla."
That was three years ago.
I found out a couple of days ago that Vicky died. The breast cancer board that we had been a part of had broken up and its members are now scattered to the winds.
So I can't gather them all together for you Vicky.
But I want to honor you here. A lot of people read this blog and site.
Vicky was a NY Met fan. But was forced to become a Yankee fan because she was outnumbered in her house. Her two boys were diehard Yankee fans and so she, begrudgingly, became one too. But I can tell you now that she secretly joined me in rooting for the Mets.
Vicky worked at West Point and was honored by that institution before she had to step down because her disease was getting hard to handle while working full time.
Vicky would brave the coldest and hottest weather to be in the stands when her boys played sports. Even when she was at her sickest, she always was there to cheer them on.
Vicky always had a loving word, a prayer and a big pair of shoulders to lean on if you ever needed a friend.
Vicky was too young. Too young to be taken from this earth. Too young to be taken from her boys. Too young to have endured all she did for so long.
Vicky was my friend. She was my sister. She was gracious and loving and full of compassion. I will miss my friend.
I will never forget you Vicky.
May you rest in peace.
Sunday, September 23, 2007
This week our BC sister Shelli died.
I found out my friend who I was diagnosed with named Vicky died.
Jayne, the tripleneg girl who was so scared of her new diagnosis died.
That was just this week.
When asked to contribute to the cause or the cure or awareness, remember those girls and all the other warrior angels that went before us.
Check to see where the money is going to.
Check to see how much goes to the actual breast cancer "charity"
Check to see if it is a real charity.
Check to see if it is really "research"
Check to see if you are contributing to an awareness campaign... because those of us who ARE aware know that OUR CURE IS IN A RESEARCH LAB.
It isn't in a pink vacuum. It isn't in a lipstick or a container of yogurt.
Go to the NIH and look up their designated breast cancer research labs.
Two very good ones are Fred Hutchinson and the Cold Spring Harbor lab.
THEN decide. Do you need a pink spatula? Or can you keep your old one and send the money it would cost to buy the pink spatula directly to the lab of your choice? No middle man. No percentage points. The whole amount.
I am mad today.
We are losing friends. I want to hit the beast where it hurts. In the test tube. Because we ain't gonna touch him with a Lean Cuisine.
Sunday, September 16, 2007
It can be found at nosurrenderbreastcancerhelp.com
This is very exciting because it is a way to connect with the newly diagnosed, fellow sisters in treatment, and friends who are living with breast cancer.
More will be added to help the newly diagnosed navigate the choppy waters that lay ahead of them. And the latest in research will be added to help those of us who cope with the disease every day.
There is always a wealth of information that can be found by the live interaction that is shared by the Sisterhood on the message forum.
Thank you for being patient with me while I set this up. And thank you for all your encouragement to give me the push I needed to finally go ahead and do it.
To everyone who writes to me here or in email or on the message boards, I don't know what I would do without you. You Rock.
Sunday, September 9, 2007
However, desperate times call for desperate measures and a little Rainman lives in all of us.
I spend a good part of my day, every day, at breastcancer.org. There is a fantastic group of women there and they have become my family. But BCO needed to upgrade its software... and not in a little way. They went for it. They built it from the ground up with their own servers ( still not sure what a server is because I used to be a caterer and every time I hear that expression I imagine one of my caterwaiters passing a canape on a silver tray.) Whatever they are, canape or no, BCO got themselves some new ones.
Unfortunately all hell broke loose over there because no one could sign in, navigate the boards, find their old passwords, log in names had disappeared and women's real names were appearing and in short- it was a disaster. I have never felt more sorry for a group of people in my life. The members AND the staff were both suffering.
So I googled discussion forums.
Next thing I know I am creating one. It was kind of fun.
It asked me if I was ready to launch. Good God. WAS I READY TO LAUNCH???
You know? What they hell. I hit "Yes."
And the new forum was born.
I told two friends and they told two friends and so on and so on and next thing I know I have over 12,000 hits and 50 members. AND THEY LIKE IT! I feel like I an hosting a really great party with absolutely no clean up involved.
It is a place for the BCO girls to come to while things get back to normal at our old home... but it is also a place that new women are joining that have nothing to do with BCO. THAT is very exciting to me.
I am still posting over at the old homestead when I can get in to post. And I plan on staying there like I always was. But I have to admit, this new spot I created is growing on me... and I am truly enjoying the creative process of making a home from scratch.
It you care to stop by this is the address: Message Boards
We're havin a party!
Friday, September 7, 2007
Please join in!!
Normally we would meet at breastcancerorg, but things are a little screwy over there right now. So until things get back to normal this spot was created.
Cut and paste this link or click on the title of this post.
BCO members- this should hold us over until the boards are normal again!
Thursday, September 6, 2007
I was told I had the "bad" cancer, the triple negative kind that has no drugs to counteract its attempts to recur after my treatments ended. I was also informed I had the most aggressive type and that it was close to the chest wall. I was not given a lot of hope. In fact, I was scared to death... of death.
But I fought. I learned how a few days after my diagnosis when I was in Manhattan the morning of September 11th, 2001. I went from frightened and helpless to warrior. I saw that I was given the chance to fight and the people who were in those buildings, smoldering before me, did not.
I was told that chemo works better on triple negative disease, and so I agreed to go through it. I had many surgeries and radiation, too.
Then the waiting began. With cancer, if you can make it past your first two years without a recurrence, then the tumor is most likely completely gone. Doctors don't really feel at ease though until you reach your third year. Then, if you are triple negative, if your cancer has not returned, your chances of it ever returning sharply decline.
With each succeeding year of being disease free, a triple negative cancer is less likely to return.
I was the most frightened reaching my five year mark, probably because there is so much emphasis put on it with the way statistics are measured.
My five year came and went, but there was a problem, like a distant bell ringing in my heart. I knew there was something wrong, I just couldn't seem to get my breast surgeon to listen to me....
My triple negative cancer did not return. But I did get a new primary of lobular, estrogen/progesterone positive cancer. A new cancer in the other breast is not metastatic disease, it is treated as aggressively as any newly diagnosed breast cancer. And I am being treated as aggressively as humanly possible because we are shooting for nothing less than a cure.
I will always reflect on this day as the day that changed my life profoundly. I am smarter and I am stronger and I am victorious.
I am also happy.
I thought my first go around made me appreciate life more - well this time I am truly in awe of all that surrounds me and I am making the most of every single moment on this earth.
And oh I love the life within me
I feel a part of everything I see
And oh I love the life around me
A part of everything is here in me
I may be in chemo again this cancerversary, but I feel more at peace and more grateful and more full of life than I have in six years and one day.
Thank you, all my sisters, for bringing me through the dark times, for laughing with me at the absurd times, for crying with me both tears of joy and heartbreak, and for the love you have shown me.
And, if there are any newbies reading this: You can do this. You can get through every step you are being asked to take, every treatment you must endure, every victory small and large. There are women around you ready to take your hand and show you the way. You have entered a sisterhood stronger than anything you could ever imagine and you are, above all, not alone.
To six years!
I made a promise I swore I'd always remember, no retreat, baby, no surrender.
Monday, September 3, 2007
I don't know if any of you have ever noticed this about me but I am sometimes opinionated.
I once wrote a piece for a publication that was entitled
"If someone offers you a pink ribbon strangle them with it."
The editor thought it was a tad negative. Perhaps I had best not offend the hundreds of thousands of women who run, walk, race and live and die every day with a pink ribbon proudly pinned to their chests. She was right. I was in a bad place and saw nothing pretty or pink about cancer at the time. There I was, NED*, three years out with more side effects from my treatment than I care to think about. I was trying to get people's attention to raise money towards research in the piece, but the title hinted at my untapped anger I had at BC in general.
Three years later here I am back in chemo again. I have no hair or eyelashes. My body is screaming from the Abraxane. I have a newly inserted tissue expander that replaced my ruptured one that has to be squeezed, smashed and smooshed and drained with an alarmingly large needle every single day because there is so much fluid around it my "breast" gets to be the size of a football. I missed chemo this week because of it and that means that I will be done in November now instead of October. I have Lymphedema in both arms and I am, in a word, a chocolate mess.
CANCER CHANGED MY LIFE.
For the better.
Yes. You read that right.
I got a new primary the second time around. I could have been diagnosed with mets. With my node involvement I may face that diagnosis someday. We are all an MRI or PET/CT away from hearing that news. Am I going to wait for it?
I AM ALIVE.
I have met the best friends I ever had in my life since I have had cancer. I have seen the best in people and the worst in people. And what's more, I have seen the best in me.
Because of cancer I found that inner warrior inside - that we ALL have - who only reveals herself when we really, truly need her and when we least expect it.
Because of cancer I am smarter. I can speak Doctor fluently now.
Because of cancer I know better.
Because of cancer I can spot BS in under 45 seconds.
Because of cancer the air smells sweeter, the sun shines brighter, and I have become a part of all the beauty that surrounds me.
Because of cancer I know I can handle just about anything.
Because of cancer I have been touched by women all over the world and I know them and they know me and we are sisters.
Because of cancer I have been given the gift of being able to actually make a difference in someone else's life.
My life may be shortened, but it will be lived better than a lot of people I know who have never had cancer.
It also made me mad as hell.
But am I going to let the Beast win?
And make the Beast’s day? Are you kidding??
I refuse to let cancer take over.
I HATE that song "Live Like You Are Dying"
This is what the Beast hopes for. It is what it likes to do even more than kill us- it likes to rob us of our hope and spirit.
I have lost friends to this Beast-I have seen them die.
It is horrible and scary and sad and infuriating.
I didn't survive cancer surgeries and treatments to live like I was dying! I am going to LIVE LIKE I AM LIVING!
If I get down about side effects or long term disabilities from cancer, or life changes that happened because of cancer, I will be damned if I am going to give the Beast credit.
I am going to give it hell instead!
The Beast did not take away my life.
The Beast did not take away my spirit.
The Beast did not take away my heart.
The Beast got some tissue, a few cells and some DNA. I reciprocated. I removed the rest of the tissue. I killed the cells the Beast was living in. I stopped the DNA from duplicating so it would die. I gave the Beast radiation, adriamycin, cytoxan, methotrexate, 5-fu, and abraxane. Someone should have told the Beast not to bring a knife to a gun fight. I don't play fair because either does the Beast.
I don't permit myself to circle the negativity drain. Life is too short to waste one precious moment dwelling on all that could have been and would have been if I never had cancer... I have the here and now. I know what I have to do to be NED again and I am doing it. It is practically killing me- but I refuse to give the Beast an inch. And I will let my Plastic Surgeon squeeze the ever livin hell out of my breast until heals and looks right again, because when I dance with NED I want to look hot.
You won't find me ringing the dinner bell for the Beast.
Get up, look up and never give up.
* NED stands for No Evidence of Disease, technically. But to breast cancer survivors it is a HE and he is our knight in shining armor and we all want to dance with him forever
Saturday, August 25, 2007
My heart is breaking. I go in for surgery on August 28th. I have triple negative invasive ductal breast cancer. I have not read one good thing about the prognosis of it. I am a mother, wife, grandma and I have wonderful friends, but none that can truly understand my feelings. I am not sleeping at all. I am sitting here wishing I knew someone to call and to be my friend. I am just 51 years old. I love my family so much. I am trying to cling to hope. Please if anyone wants to give me their phone number, I really really need to talk. I don't have a blog but my daughter does. You can see my beautiful grandchildren. She posted a post about me about a week ago. My my email is firstname.lastname@example.org
I pray someone sees this today (Saturday)
Cheryl, we are all with you and you are not alone.
I want to tell you a few things about tripleneg.
First, I am a SIX YEAR survivor of a highly aggressive tripleneg cancer. It is gone. It CAN be beaten.
Please don't be confused about my stories of the chemo and surgeries I am undergoing now because that is for a NEW cancer that is NOT tripleneg but, rather, and entirely different type of cancer that is lobular and ER/PR POSITIVE.
Tripleneg has a bad rap. Yes, it is more aggressive. And no, there is no "after-drug" for it like Tamoxifen or Arimidex. And it seems every time we turn on the news we hear about a brand new drug that is for everyone else BUT triplenegs.
Let not your heart be troubled. There are breakthroughs happening right now. New drug combos are being tested and used and they are working wonders on ER/PR negative cancers. And the even better news is, no matter what kind of chemo you get, CHEMO WORKS BETTER ON TRIPLENEG THAN ON ER/PR POSITIVE CANCER. What's more, if you are disease free for more than four years your chances of your cancer ever returning are almost zero.
I hate the term TRIPLENEG. Because it is misleading.
Here is what it means:
You are negative for estrogen and progesterone receptors. All that means is that your cancer was not fueled by estrogen or progesterone.
You are also negative for the Her2Nue oncogene. That means that your body doesn't over-express this gene.
So why is it considered a bad thing? That is just it! It ISN'T a bad thing!!
The first thing is that, for now, there are no drugs to take after treatment like ER/PR Positive women can take. The drugs they take block estrogen. Since an ER/PR Negative tumor is impervious to estrogen and its effects, you don't need to block it.
The second thing is that being Her2 POSITIVE is a BAD THING!
You do not want to be over-expressing a gene that makes cancer grow! Every tripleneg should be HAPPY to be NEGATIVE for Her2.
If you were Her2 positive, you would take Herceptin, the wonder drug that fights the Her2 gene. But you do not need it.
For some reason, docs have lumped all three together simply because there are no drugs for triplenegs to take. It really doesn't make much sense when you think about it.
There is HOPE for triplenegs.
There are ongoing studies for triplenegs.
There are new chemo combinations that are working wonders on triplenegs.
And you can BEAT tripleneg.
Carboplatin, Cisplatin, Avastin, Xeloda, Abraxane are just a few of the drugs being used to kill estrogen/progesterone negative cancer cells.
And in the future? There very well might be a drug to take post treatment. The newest Her2 drug, Tykerb, has been shown to kill off EGFR cells that triplenegs also have. Studies are being done right now.
So please, don't get overwhelmed by your diagnosis.
Take this one step at a time, one moment at a time. Now you must focus on your upcoming surgery. After your surgery, you will be rid of the tumor. Then you have to heal.
Your next step, depending on your pathology report, will be some sort of chemo. But you are not there yet. So don't get ahead of yourself. But if you must, remember the GOOD NEWS. Chemo will kill off any stray cells left over. And chemo works BETTER and more COMPLETELY on Tripleneg cancers than any others.
Cheryl, you make it through this. It doesn't seem like it now, but you will. I promise!
Good luck to you my friend!
Tuesday, August 7, 2007
When one beloved member posted that her cancer had come back "worse than ever" and that the oncologist gave her only two months there was fear on the site. We had dealt with many other sisters who had received a mets diagnosis, but not like this. After this woman posted, three others also received horrible news. The women wanted to talk about how scared they were for their friends and for themselves, because we all know we are just an MRI away from that same diagnosis. But they also wanted to find a way to encompass and shelter these sisters and help them through the storm they were in.
It became a wonderful, loving place. We had so many hits that BCO gave us our own forum. And the circle grew and grew. Finally mets girls felt they could post about themselves and know they wouldn't be scaring anyone - why? Because we were created for them. Girls who had scary tests started to come. Wives whose husbands were mistreating them in the worst way because they had cancer could come and find shelter. And the best part was, it was also fun. There is laughter that emanates from those covered wagons. It is a cyber world that seems so real you could almost smell the cowboy coffee cooking in the morning.
This past weekend the cyber world became real. One of the Circle Girls opened her house up for a "Real Wagon Gathering." Girls came from as far as Alaska to this upstate New York slice of heaven. Faces and voices could be matched with the words we had shared over the past year, through the hardest of times and the most joyous of times.
I could not attend because of my treatment schedule. This saddened me more than I can express. On Saturday night my phone rang. I picked it up and heard laughter and shouting and music. The Circle Girls were calling me. One after one they got on the phone and we said hello and talked about just how wonderful this little internet thread had become. And then I heard singing. It got louder. I was told that the cell phone was being held up and I was part of the circle they created around the fire. They asked me to sing along with them and I could feel myself dancing around the fire with my sisters, a real part of this amazing group of women. It will always be a moment in time I will never forget.
We have been asked to deal with a lot when we are diagnosed with cancer. And those first few days and weeks can be a very dark and lonely place. But if you are very lucky, a sister will reach out to you. Someone who has been through what you are about to face will hug you and tell you that you may be in the worst place in your life, but you are with the best of people you will ever know.
Friends come and go. Sisters don't. I have had vapid friendships with people since my diagnosis who just don't get it. The kind of people who complain to you about the way their colorist did their hair when you are standing there in a wig because you are bald. The kind of people who diminish what you are enduring by making the most inane problems in their lives life or death when you are literally fighting for your life with chemicals and surgeries. These "friends" come and go. And it is ok. Because we have our sisters. We have women who know with just a look what we are thinking. Who know how scared we are. Who understand what is important. Women who are part of our hearts and always will be.
When you are a member of an internet support group words are written and you believe them, but not until something happens do you really see what your true friends are made of. The cancer survivors who share this blog with me have become a very important part of my life. It is because of what we have experienced and the way we know instinctively how to reach out to one another. I have found that the bond I have made with other women who have faced down the beast is as deep as any blood relation, in fact, it is deeper. This weekend, even though it was only over the phone, I felt the love of the women who have become my family over wires and fiber optics many a late night and days when I should be working and not checking who is online.
No friendship with a "civilian" could ever match what breast cancer survivors feel between each other.
The woman who had her cancer come back worse than ever with only two months to live? She is NED now. That means No Evidence of Disease - which means she is doing fine. Of course, if you are a survivor you knew that already.
From two months to live to no evidence of disease.
I told you.
Something magical is happening.
Monday, July 30, 2007
It was given to me by one of the most compassionate and loving people I know.
She also has taught me a lot about strength. I watched her go through her cancer treatments and she was always looking for the light and never let the worst of that horrible time get to her. Now that I am in treatment again, I look to her example that she set for me in 2005. Her name is Jen and she is a wonderful writer. I have to return the honor to her as well. Because her blog, and her loving spirit have moved me more that I can say. This is where you can find her wonderful writing http://jenstersmusings.blogspot.com/
Thank you Jen.
About the Award- it took me a couple of days to properly reflect on bloggers who have touched me. Here now are my special choices.
First, here are the award details:
Here are the rules:
1. Copy this set of rules.
2. Reflect on five bloggers and write a least a paragraph about each one.
3. Make sure you link this post so others can read it and the rules.
4. Go leave your chosen bloggers a comment and let them know they’ve been given the award.
5. Put the award icon on your site.
Now is the really hard part - picking five other bloggers for this award. It’s not that there isn’t a plethora of deserving people. It’s that there are so many to choose from. Decisiveness isn’t one of my strong suits. But I have chosen five bloggers who, to me, embody the concepts of the Blogger Reflection Award.
Jacque is a woman I have met through this blog and also someone I have seen post on breastcancer.org. She is a warm and giving person. She is going through a lot right now, but manages to always be there for people who need a helping hand or a word of encouragement.
I am grateful I have had the chance to get to know this exceptional woman.
This is her blog: http://jacqnielsplace.blogspot.com/
Kelly is my long lost sister who I never knew existed until I started this blog. She and I have so many things in common, and she just "gets" me. She is beautiful both inside and out and is unfairly having to fight the Beast yet again. But she lives a life that keeps the Beast away and lives in the moment. She has many friends and is a good friend to many. I am so happy I have met her - she is a wonderful, insightful, and fun person- I wish I had her sparkle! This is her blog: http://www.keepingtrackofkelly.blogspot.com/
Deb is my hero. We have been through a lot together on breastcancer.org and she has shown me what kind of person I wish I could be more like. When you think of Deb you instantly smile. JOY surrounds her. Love flows from her. Her heart is huge and she gives love and hope to many. I cannot imagine my life without Deb in it. Here is her blog: http://glassylady41.spaces.live.com/
Dana is another dear sister who I met in 2005. She started a thread at breastcancer.org as a support group for all the girls going through chemo that June. I piped in from time to time to give them some of my experiences from my days in chemo. She welcomed me and made me feel like so much a part of the group that I stayed with them- the Junesterettes- til they were finished. She is a wonderful writer, a gifted artist and a true friend. She is there for everyone and always has a smile and a word of encouragement. Her blog is http://danahollis.blogspot.com/
Stephanie is a fellow tripneg sister. She has endured more than anyone should ever have to. She is going through a particularly difficult time right now but somehow she STILL has time to reach out to others and offer her loving support. She is also incredibly smart. She keeps up with all the latest research and takes care of her other tripneg sisters by always sharing what she has learned. She is a beautiful woman with gorgeous children. The way she expresses her faith has lifted me up so many times and she has sustained me in my times of crisis. I am honored to know her. This is her blog: http://stephaniebabbsplace.blogspot.com/
I would like to add so many more people, but want to stick to the rules here.
I am honored to be among you.
Thank you my sisters.
Tuesday, July 24, 2007
Friday, July 20, 2007
NEW YORK (Reuters Health) - Among breast cancer survivors, adopting a low-fat diet high in vegetables, fruit and fiber does not prevent the cancer from returning or prolong survival, according to a paper in the Journal of the American Medical Association.
Dr. John P. Pierce and his associates designed the Women's Healthy Eating and Living (WHEL) trial, based on evidence that plant-derived foods contain anti-cancer chemicals.
Pierce, at the University of California, San Diego, and his team describe the intervention as "a telephone counseling program supplemented with cooking classes and newsletters that promoted daily targets of 5 vegetable servings plus 16 ounces of vegetable juice; 3 fruit servings; 30 grams of fiber; and 15 to 20 percent of" calories from fat.
Subjects in the comparison group received care as usual and were given publications from the National Cancer Institute and the US Department of Health and Human Services, describing the "5-A-Day" dietary guidelines. In addition to five servings of vegetables and fruits, the diet recommends 20 grams of fiber and less than 30 percent of calories from fat.
Between 1995 and 2000, WHEL investigators enrolled more than 3,000 women who were previously treated for breast cancer. Follow-up continued until 2006. They report outcomes for 1,537 subjects randomly assigned to the intervention group and 1,561 assigned to the comparison group.
As noted, the special diet did not prevent breast cancer from returning and it did not improve survival. Roughly 17 percent of patients in each group had their cancer return and about 10 percent in each died during follow-up.
In a related editorial, Dr. Susan M. Gapstur and Dr. Seema Khan, from the Feinberg School of Medicine in Chicago, compared the WHEL study findings with those of the Women's Intervention Nutrition Study (WINS). According to WINS trial results, a low-fat diet imparted significant increases in cancer-free survival, which was associated with a 6-pound weight difference between study groups at year 3.
In the WHEL study, on the other hand, weight loss and amount of daily calories did not differ between the two patient groups, and the actual percentage of calories from fat increased during the trial in both groups.
The editorialists suggest that "these results call into question the validity of some components of the self-reported dietary data," and they attribute the negative findings at least partially to lack of adherence to the diet.
SOURCE: Journal of the American Medical Association, July 18, 2007.
OK, let's test this out.
Before I was diagnosed with tripleneg cancer, I consumed a plant based diet, was very careful about what I put into my body ( except for Skittles) and generally was a pain in the ass to go out to dinner with.
Then I got cancer. The "bad" one. The one they have no clue how to prevent. Until they did the Nurse's Study and discovered that a low fat diet, under 30 grams a day, kept tripleneg cancer from recurring. They also said that ground flaxseeds helped too. So that is what I did. I kept my plant based healthy diet but really cut out the fat. It isn't easy to keep to 30 grams a day when you figure that a tablespoon of olive oil has 14 grams.
But guess what? The "bad" cancer didn't return. I am coming up on six years tripleneg free.
But the "good" cancer- the estrogen/progesterone positive cancer decided to take me on a few months after my five year mark of being a cancer survivor.
So what does this all mean?
It is a crap shoot.
I am still eating the low fat, plant based diet- but have added lamb once a week to keep my blood counts strong - that is what I tell myself- the truth is I have a thing for rack of lamb.
Next week they could tell us that Doritos cure cancer.
I can't keep up anymore.
Eat a healthy diet and die healthy.
Live it up and whistle past the graveyard.
Just ENJOY yourself. Life is too short to take these studies too seriously.
I prescribe a pint of Phish Food STAT.
As my mentor, Julia Child used to say:
"Everything in moderation. INCLUDING moderation."
Friday, July 13, 2007
Summertime. Being a kid. Growing up when kids could still be kids.
Life was so simple then. Time had no real meaning. Certain things marked time for us, not clocks:
When the streetlights came on it was time to go home.
When the back-to-school ads started to appear it was time to try and squeeze out every last bit of summer and freedom that we could.
All that time seemed so vast in front of us when we were kids. Who could ever have imagined what being a grown up was? Who wanted to?
Childhood friends are scattered to the winds now. The vacant lots we played in have houses in them. The kitchen drawer that stored candy is now covered in a granite counter top and filled with protein bars. The movie theaters don't have the big screen with the curtain that opens anymore. Sandwiches don't taste as good as your mom's did when you make them yourself. The future is no longer full of that same promise and excitement... things have changed.
Cancer has a way of robbing you of the ability to look too far down the road now. It is too scary. And yet, it also gives us a sort of time traveling ability because we are able to clearly remember our pasts... our happy pasts when we were free and were able to be joyful without that trace of fear that catches us before we get too carried away.
I guess we should look at today as being a time to treasure too because we know that the future sometimes has unpleasant surprises awaiting us.
So starting now I will stop thinking of this as a hard stretch of chemo-time and start enjoying all the parts that are joyful. I will never be able to go back to my cancer free days, but I can try to remember what it felt like. Try to make life as simple as waiting for the street lights to go on as my sign it is time to make dinner. My sandwiches won't taste as good but I will try.
Bob Dylan wrote on the liner notes of an album (remember record albums?)
"Yeah the old days are gone forever and the new ones ain't far behind..."
I am in a new day now so I better make it count. Because today soon will be a part of my past as well and I like to be able to look back and see the amount of true happiness I had been blessed with before now. I intend on feeling that way again. October and the end of treatment seems so far away... but so did June and school being out for summer vacation when I was a kid and it was only March. I will get there.
Hey Mom and Dad, thanks for the wonderful childhood. Those memories have warmed me even on the coldest of days.
That's my older brother there in the picture above. He passed away five years ago. We all miss him but can still see his smile.
Cut and paste if link won't work
Monday, July 9, 2007
We still go to work.
We still make dinner for the kids.
We still do laundry.
We still take out the garbage and clean the house.
We wear a wig to make ourselves appear healthy and to retain our normal appearance.
By doing this we win small battles every day that add up in the bigger war against cancer.
It isn't easy though. I actually have dreams about my hair. I sometimes watch a shampoo commercial on TV and think I would like to try it and then I remember... I won't be using shampoo with sunflower essence and pearls for shine for a long, long time. And I have to endure the treatments, just like all my other sisters do.
Since this is my second time around with a primary cancer I have the ability to see down the road. I know I felt hopeless the first time around, as if the treatments would never, ever end and I would never, ever get my life back. But I did. And I had a normal life for five years. So this time around I just have to remember that next year at this time I WILL be buying shampoo and will be myself again.
Why am I telling you all this??? Because I want to ask you a question. Why is it that women can do all that we do and try to keep our lives as un-interrupted as possible, yet other people, with "lesser" illnesses seem to revel in the fact they are sick?
I have two examples. One is a friend who has "fibromyalgia", which the medical community looks at as a "garbage can" diagnosis. That means when the docs can't figure out what is wrong with you they throw you in the garbage can along with all the other whiners and complainers that they cannot seem to help. It has been my experience that the people who have "fibromylagia" really have something else wrong but since no one knows what it is they acquire this catch all phrase. But back to my friend. She has now made her "disease" part of her life to such an extent that she almost introduces herself to strangers as "Hi, I am Mary and I have fibromyalgia". This has now morphed into..." because of my fibromylagia I can't do anything anymore so I am going to stay indoors watching Dr. Phil reruns while my life passes me by."
I want to shake her sometimes and tell her to get up, go outside and live her life. There are WORST things to have and your attitude is your altitude. If you want to wallow in self pity and be a perpetual victim and cease to participate in life, then you are robbing yourself of precious days that you cannot see passing you by- days you cannot ever get back again.
Wouldn't any of you give anything to have a few cancer free days back? WE see how precious time is- why is so hard for everyone else?
The second example is a friend's husband. This man is a bum. There is no other way to describe him. He has never worked a day in his life and went from his parents supporting him to his wife, my friend, supporting him. He sits home all day and pretends to be this big wheeler-dealer in front of the neighbors, when in fact he has never had a job. What is worse, he treats my friend like she is some sort of dingbat housewife in front of people, shaking his head and mumbling to anyone who will listen how pathetic she is and he is the big bread winner and decision maker in the family.
He is supposedly "sick" now too. He claims to have hepatitis so that makes it impossible for him to work... as if he ever DID work. When I first met him, in the first thirty seconds of our conversation, he told me about his "hep C" and how debilitated he is.
I know people who really ARE debilitated by "hep C" - he isn't one of them. He jogs every morning, belongs to a gym and just hired a personal trainer (his wife of course is footing that bill). Does that sound like debilitated to you?
If you have read this far I suppose you have sensed I am mad. I am. The other day I asked this man a question about a neighborhood project we are working on. He has managed to mismanage it and the entire block is mad at him. I asked him something that he couldn't answer because he couldn't keep his lies straight. His response?
"Don't ask me any questions, I am sick."
There I was standing there in the throes of Abraxane side effects with a blood count of 1 and he is telling ME he can't answer because HE is sick? He stays home all day, except for his trips to the gym and buying himself clothes (which his wife pays for) and gossiping with the housewives on the street and does absolutely nothing to contribute to his home, his wife, his neighborhood, to anything. In fact, when his wife comes home from work SHE has to make dinner for him (because he is sick), SHE has to mow the lawn and rake the leaves (because he is sick), she even has to shovel the snow. And if she asks for a hand he tells her he can't-- because he is sick. He does this even as he leaves for the gym to work out.
He knows that I have cancer and am in the middle of chemo, yet he has the audacity to play the "hep C" card. In the grand scheme of the world viewed in terms of Rock, Paper, Scissors, cancer covers hep C every time. But I didn't say anything. I wanted to but I believe the man is mentally ill and a pathological liar. A person gets NO WHERE arguing with someone like that. I simply walked away, in my wig and still limping a little from the neuropathy in my foot, thinking, I may be sicker than him on paper - but thank God I am not as sick as he is in person. I will continue to fight the beast and will lose what is left of my eyelashes and brows, but there is makeup for that. I will finish my course of treatments and never let anyone else know what I am doing because to me, I have a battle against an unwelcomed visitor and I am showing it the door. My friend's husband welcomed hepatitis C into his life because it is absolutely the one and only thing he has ever accomplished in this life.
I love life and will not let cancer define me. Like a house with termites, I am calling in the big exterminators to get rid of them and I will replace the damaged wood and re-paint and still keep my garden beautiful because the termites don't define a house and cancer or ANY other disease does not define a person.
I pity the poor bastard. Living off his wife, begging for attention from anyone who will give it to him, and embracing his disease like an accomplishment rather than something that has to be fought.
Thanks but no thanks.
I will stick with my warrior sisters who fight and live everyday to the fullest... who have reconstructive surgeries, who go out on dates because the FUTURE is ahead of us and cancer is not on our dance cards. Not by a long shot.
To all of you who have never played "the cancer card" I salute you. I lift my glass to you and shout No Surrender! Because we are so much stronger than that and too cool to wimp out like my friend's husband does- every minute of every day.
Wednesday, June 20, 2007
Today I was supposed to start Taxol. Taxol is a taxane, which is class of chemotherapy drugs made from a Yew tree.
They administer it by IV and mix it with a detergent known as cremaphore. (Not sure of the spelling on that, will have to edit later.)
Cremaphore is an irritant, and many people are allergic to it. No one gets allergic to the Taxol itself, but they can have very adverse reactions to the detergent. SO, the medical community has designed a system. They had help from the Department of Motor Vehicles in the planning of this.
Part One: Load up patient with mega dose of steroids and Benadryl.
Part Two: Start Taxol and wait to see if patient starts having trouble breathing, is flushed, throat closing up...etc.
Part Three: If any of these reactions occur- STOP the Taxol and give more Benadryl and steroids and do it AGAIN.
Part Four: If reaction continues repeat part three. If the patient still persists in reacting to drug take them off it and either send them home if they can stop it or send to the ER.
Part Five: If patient does not have a reaction, follow step one and two and make sure patient knows that she will be there for over four hours every time she gets this drug.
Sounds like fun, eh?
Then along comes Abraxane. Abraxane is the drug Taxol that is NOT mixed with a detergent but is coated with albumin, a protein that is found naturally in the body. There is NO allergic reaction to it. There is no need for Benadryl or steroids and it takes only 31 minutes to infuse. And the best part? It is more effective.
Now the kicker:
They insurance companies won't pay for Abraxane UNLESS YOU ARE ALLERGIC TO TAXOL.
They would rather pay for the Benadryl, steroids, hospital stays and wreak havoc on your body then give you something gentler that works better.
Does this make any sense to anyone??
Is this thing on??
Now for me.
I go in today fully expecting to be in the ER by dinner time because I am allergic to just about everything. I told them this. I begged for Abraxane. Nothing worked. My dad was with me and we settled in for our four hour ride into hell.
Well, I never got there.
Today we discovered that I am allergic to Benadryl! Who in hell is allergic to Benadryl? I was once told by an ER doc that I should avoid it after I took it for a bee sting and had more trouble with the Benadryl than the sting. I informed my nurse of this but she said that "didn't count."
My face turned dark red, my heart was racing, my lips and arms were numb, I was sweating and freezing at the same time, I was having vertigo attacks and holding on to the chair for dear life. Before we started my pulse was 60. After the Benadryl it went to 112.
The nurse wanted to wait and see what happened. She had the marvelous idea that I would feel better and we could still do the Taxol and if we did and I was allergic to that too, well then she could always give me Benadryl!
Sometimes I think I am living in a Dr. Seuss book, I really do.
I asked, nicely, if it would be at all possible if maybe a DOCTOR could make that call and my oncologist came in and asked me what I was feeling. My dad tells me I made absolutely no sense in my reply. The doctor apparently only needed to look at my face, which resembled a death mask, and he told the nurse to unplug me and send me home.
I do not know what I will do next. You can be sure I am going to bring up the Abraxane.
Why do cancer patients have to fight for the meds that will help them and not harm them? Isn't cancer enough?
Tuesday, June 12, 2007
The current issue of Mamm Magazine has an excerpt from my book in it. They took two chapters and condensed them into an article. My wish is that someone who reads it will take that extra step to be screened more carefully in order to prevent any more advanced cases of breast cancer being found.
It is ironic that this article is being published now, when I have been re-diagnosed myself with a more advanced cancer than I had the first time. I did push my then breast surgeon last YEAR to please give me an surgical biopsy of "my area of concern." But he said it was not necessary and that it was a hematoma from the core biopsy I had a month before. A year later, I am in chemo with a new breast surgeon. I can't unring the bell, but I wish I had fought harder.
Please, keep pushing. If you think something is wrong you know your body best. Push until you know for sure you are OK. And remember, this is just as important in post cancer treatment as it is when you are just beginning your screenings. I am lucky my new primary was found before it got any bigger and became untreatable.
Mamm is an excellent magazine. It touches on everything we are struggling with and celebrating. I am proud to be a contributor.
As I said, they had to edit quite a bit to fit into the magazine format, so I thought I would print the entire list of warning signs of a bad doctor for you from my book.
Warning Signs of a Bad Doctor
- Talks to you only in the exam room while you are undressed
- Never looks at you when you are speaking, but rather, writes furiously in your chart not listening to a word you say
- Has not reviewed your case at all prior to your visit. You know this because while you are perched on the iron table in your paper dress waiting for him, you hear him leave the exam room of another patient, then he is standing outside your door and you hear him remove your chart from the little cubby on the front of your door, flip through a few pages for 30 seconds and then he comes in. THAT is not what I call PREP. Either come in and open the chart and talk to ME or review it before hand at your desk in a proper way.
- He doesn’t wash his hands upon entering. He just left another exam room- do you really want him touching you?
- He makes no eye contact, isn’t quite sure of your name and simply goes through the motions of an exam. Or worse, never touches you. Never lays hands on you but writes up five prescriptions anyway.
- He acts as if we are all the same person- more like cars in a body shop than human. Once he opens the hood of a Chevy it is the same as a Ford.
- He doesn’t let you speak, ask questions, or express your fears
- He doesn’t seem to care that you have cancer. There is no empathy. He either tells you he can “cure you” or he says off hand “we’ll see if this works”
- When you question him about wanting a test or a certain chemo he makes a face because you “read it on the internet”. He then proceeds to inform you that anything you read is wrong and he is the only one who is right.
- He has the same routine with everyone, never thinks of you as an individual. You can tell from the way he is talking it is a rote speech he has delivered thousands of times. But he never puts YOU into the speech. You can tell your particular case is of no interest to him—he has done this thousands of times, he would like you to just be quiet and listen to what he has to say.
- You express a fear about your hair falling out and he makes a joke and tells you to stop being vain.
- He doesn’t take into account the quality of your life when he is lining up one harsh treatment after another.
- If you ask him about a side effect he says it “goes with the territory”
- He makes you wait—not just in the waiting room but even in the exam room where you are left there waiting and waiting. At least in the waiting room there were magazines to read! Once in a while, and if an apology is given then it is fine, but every time with no apology is unacceptable
- He is unavailable for after hours emergencies. OR if you finally do get through to him, he insinuates that you “bothered” him for nothing
- He won’t share your case and what he feels needs to be done with your other doctors.
- He never calls you with test results. I personally am still waiting for the result of a brain MRI I had in 2002 from a doctor who “forgot”. Thankfully, the radiologist told me I was ok.
- He thinks you are overreacting and might need some kind of counseling, anti-depressant, tranquilizer, etc. or you have fibromyalgia—when if he took five minutes to put your mind at east you wouldn’t need anything.
- He won’t let you bring your husband, brother, sister, or best friend in with you to discuss your case- all you are doing is taking up too much of his time.
- He doesn’t remember you. After six months of chemo he still has no clue who you are…. Don’t wait six months to discover this. Six minutes will tell you a lot about your doctor!
So, how many of you have seen a bad doctor??? Remember girls! They work FOR YOU!