Breast Cancer DIY

...created by women with breast cancer, for women and men with breast cancer!

Testimonials, and other gentle thoughts

Farewell My Lovelies, from Jessica Queller

I

f someone had told me at 30 that the next five years I would have my breasts removed in a preemptive strike against cancer, I’d have called her crazy.  What a difference five years make.

            Eleven months after my mother died, I tested positive for the same genetic mutation that had caused her early breast cancer and the ovarian cancer that finally killed her.  Although I was 35 and single, the idea of undergoing a double mastectomy to protect myself from cancer no longer seemed insane.  In fact, after watching my young, vibrant mother die a horrific death, it seemed the logical choice.  Some members of my family worried about me.  They believed I was wildly underestimating how traumatized I’d be when I woke up without my breasts.  I decided to have the operations because—for me—reconstructed breasts were preferable to cancer.  And yet I expected this would be a deeply mournful period of my life. 

            It turned out to be one of the most joyous.  In those final days before the surgery, I was in a feverish, almost elated state.  I’d always envisioned my friends gathering to spoil me before my wedding.  Instead, I had a “farewell breasts” night out with eight of my closest girlfriends.  In lipstick and heels, we met at a chic bistro in Manhattan’s meatpacking district, drank cosmopolitans, and laughed with abandon.  Each friend gave a long, emotional toast in my honor.  To all appearances, we were a bachelorette party—and I was the bride.

            The week before my mastectomy, my father and sister went to a nursery and bought seven large trees for me as a gift—three for inside my apartment, and four to put outside on the small terrace.  I blinked in amazement as the deliverymen carried in tree after beautiful tree, breathing new life into my home.  The loved ones in my life surrounded and buoyed me—they made me feel special and courageous. 

The first week home post-surgery, I was high on Vicodin and had drainage tubes pinned to my cotton nightie, yet I was hostess to an endless stream of visitors in what felt like an around-the-clock party.  I overdid it, of course, and my doctor soon shut down the festivities.

Two weeks after surgery, I went in to see Dr. Roses for an exam.  He held the pathology report in his hand.  “You had precancerous changes in your right breast tissue, Jessica.  Atypical ductal hyperplasia.”

I’d felt certain my breasts needed to be sacrificed for my health, but I hadn’t been expecting this.  The doctor registered the shock and disbelief on my face.  “If you had any doubt about the course of action you chose, this should dispel it.  You did the right thing.”

Two years post-surgery, though, my strongest memory is of being showered with love from the extraordinary people in my life.  I’ve learned that the most devastating experience—even losing a mother to a terrible disease—can glimmer with surprising rays of hope.

 

Jessica Queller is a television writer and the author of Pretty Is What Changes, a memoir about the genetics of breast cancer – permission granted August 19, 2008 – all rights reserved © by Jessica Queller

 

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To You, from Jill in Clovis, California:

First of all, cancer is not a death sentence. It’s more of a wake up and live thing. So many people associate cancer with death that they give up, even if they are stage one. I’ve seen it so many times in the infusion room (or as we like to call it – the confusion room). Patients roll up in the fetal position under their heated blanket and sleep. Or they sit there having a pity party for themselves and cry. Four years ago when I first stared with chemo, that was pretty much the norm in there. It was sooooo depressing!! My guess is that they caught that attitude from each other and just accepted the “death sentence” and were laying there waiting for it to happen.

My first and primary chemo partner is God so there was not even a question as to whether or not I’d be joining them. NO WAY!!! Then there were the two infusion nurses that I gravitated to and they to me. They were both wonderful Christians and we would talk as much as we could and as loud too about how awesome God was and what an incredible experience this was and how He was always with me and helping me through. He picked out my surgeon who was wonderful, prayed with me before the surgery and did an excellent job removing the cancer. He picked out my oncologist…what can I say? This doc is soooo incredible! He is a strong Christian, treats the whole patient with love and compassion, goes to a central American country as often as possible to volunteer in an orphanage there, started a local program to help people who are really in need and deserving, has annual retreats for any female (or male I guess) with breast or cervical cancer, etc., etc., etc. WOW! Talk about the ultimate caring doctor!!! He get’s my vote hands down! Even the radiation crew was great, although I did suffered an incredible 4th degree burn.

I was declared “clean” after 10 months from the surgery to the end of treatment. It came back after almost a year and spread to my bones and liver. Give up??  NEVER!!! I still go to chemo every week, I’ve been through 3 medi-ports, a nasty staph infection that took two hospital stays and 2 ½ months to clear up, all kinds of side effects and so much more but you know what?  I’m still alive and enjoying life! It’s all in the way YOU accept it and deal with it. It is no worse that having diabetes…they have to check their blood daily, take medication if it’s not right if they don’t, they could lose a limb, eyesight or even their life. Are they sitting around having pity parties?? I don’t think so. Life goes on for them and it goes on for us. You get out of it what you put into it. If you  mentally give up, your body follows and it will kill you. I have cancer but cancer doesn’t have me is truer than you think. Don’t hand your life over to it. FIGHT IT WITH ALL YOU”VE GOT!! I have God helping me do that and it’s not as bad a fight as I thought it would be. It’s definitely not a piece of cake or something I’d wish on my worse enemy but a wonderful experience through which I have met a whole lot of awesome people.    --Jill

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Isabelle, Esther, Helen, and Bev: from Ron

M

y mother, Isabelle, my sister, Esther, my daughter, Helen, & now my wife, Beverley, all lost the battle with breast cancer. My mother & her mother before her were a member of the Quaker Faith.  It is a way of life - a way one conducts ones self thru out life, I was taught to treat all people with respect and in the way that I would like to be treated myself - and to not be overly disappointed when sometimes this doesn’t happen.   

      When my mother passed from cancer in 1965 it was not very prevalent at the time and not a great deal was known about the disease. In 1979 my sister Esther, with three small children contracted a very aggressive form of breast cancer and died in 1982. My wife Beverley was diagnosed in 1989. She had a tumour removed at the local hospital and then we had to travel 200 kilometres a day to Brisbane - 5 days a week for 6 weeks, for her to undertake radium treatment.   

      The radium treatment caused her breast to become very hard, dark brown and take on the appearance of boot leather.  Beverley had breasts that matched her beauty and she became very embarrassed at this appearance,   so much so that she now preferred to shower and dress alone. I helped her as much as she would let me. It took a period of about seven years for her breast to return to normal colour & texture, and for life to return to normality. She had a six monthly appointment with the radium specialist in Brisbane,  Dr Addison who was a lovely man.  Additionally, Beverley had six monthly appointments with the cancer surgeon Dr Ian Curley. A few weeks before these appointments, Bev would get very apprehensive – obviously concerned about the outcome & findings of these visits.  I was always extra careful at these times and treated her with kid gloves so as not to let anything upset her.  

      This went on for a period of thirteen years until finally Dr Addison gave Beverley the all clear. We had the big “All Clear” party and everything returned to normal. Three months later a mammogram revealed another tumour in the same breast.  The poor girl was completely devastated, as was I.   We felt that we had done everything in our power mentally physically & spiritually with the utmost positive attitude.  After this second tumour was removed & many sessions of chemo, Beverley settled down once more, although she had changed from the easy going person I was used to. 

      When we first met Bev & I clicked from the start. She had just turned seventeen. Beverley was the most beautiful creature I had ever seen.   From across a crowded room, & before we even met I knew that this was the person I was going to spend the rest of my life with. 

      But now she became subject to mood changes - not unlike a spring that would fly off the handle at anything, or at anyone, or for no reason at all. If I tried to help in any way it would only make things worse, so in the long run it was better to say nothing, and just be there for her in the background, and also have the sense to understand the mental trauma, & anguish that breast cancer can cause. 

      When a third cancerous lump was found also in the same breast, a mastectomy was preformed, & once more Bev was back to showering & dressing alone, she was such a proud person & I fully understood that losing her hair, Her Crowing Glory, & one breast all at once was just too much. 

      When our youngest daughter Helen, contracted breast cancer, she just took it as one would take a common cold, it did not seem to bother her in the least.  A few years later when the second tumour was found & the cancer started to spread, Helen was told by her doctors that she had six months maybe a year.  She told no-one. Helen only told me when we had to visit the Townsville Hospital for an overnight stay before we were to bring our new boat down the coast.  Helen was to be my deck hand but I could see she was not going to make it, after a week on the boat in & out of hospital three times.  She was having difficulty walking, & spent a lot of time lying down.  I put Helen on a flight to Brisbane in a wheel chair.   The next day I found a new deck hand at short notice & left for the thirteen day trip home. I relayed to Helen by cell phone everything that was happening on board. Sometimes we would talk six times a day. The weather was foul at times, & maybe I should not have been there, but the boat - a 44ft Tradewinds, “Lyndall,” showed me what a fine sea boat she was.  We were only one hour out of home port Tin Can Bay, when I got the call that Helen had had a stoke & was being taken to the Maleny Palliative Hospital. I tried my hardest but did not make it in time, Helen our special child left us at 9pm on the 29 Dec 2004.  

      Helens death had an understandably dramatic effect through-out the family, particularly on Bev. She claimed that she had passed breast cancer on to her daughter and no one, nothing, could convince her otherwise. I can understand why some husbands get up & walk out when their wife contacts breast cancer.  It is one of those things that you have to live with before you can even begin to understand it.  It has a complete mind of it's own and it affects everyone in a different way. Relationships can become easily volatile, if each partner is not in tune with the other. I consider myself very lucky to have been bought up within a Quaker family and can turn the other cheek when need be, but nothing, Nothing, prepared me for the death of my dear Beverly.  In the blink on an eye I lost my best friend of almost half a century. But the wonderful memories of the life we had together shall be with me the rest of my life, breast cancer can Never take those from me.
“Ron Saarinen Pomona Qld, Australia

SPECIAL NOTE:  Please see In Loving Memory


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Two Words from Carolyn Merritt

 

 

Carolyn Merritt, of Palatine, Illinois,
and her doctor: Katherine N. Weilbaecher, MD
at Alvin J. Siteman Cancer Center  St. Louis, MO



(Our very own Marion/BCDIY quilted the wall hanging!)



Two Words:

 

Good evening.  I am Carolyn Merritt.

I’m a mother, wife, gardener, motorcycle rider, presidential appointee,  former agency head and  CEO and I am a breast cancer survivor.  

In February 2000, following a biopsy of a lump in my breast, I got a call from my surgeon’s office. 

I heard two words that would change me forever. 

It’s Cancer.” 

Hearing those words sets off a flurry of emotions and thoughts. 

Fear, panic, anger, worry, denial. 

Just saying the word “Cancer” to my husband, father, children, friends and co workers was unbelievable to me. 

Like a nightmare.

The days between that revelation and the date of scheduled surgery were the worst.

Like some monster inhabited my body and all I could think about was getting it out of me! 

But the fear of surgery was looming in front of me as well.  The disfigurement of my never perfect body was unusually disconcerting to me. 

Somewhere in the next few days however there came acceptance that I would face something heard about in whispered tones about women who were old and who had died. 

Not me.  I was only 53, still young and active.  Not me!   

I had had a lump in my breast for years!   

Every mammogram said it was fibrocystic breast tissue.  Benign. 

Now it was cancer?  How could that be?  Words like mastectomy, chemotherapy, radiation swirled in my head.   

One of the first things I did was to go on line and find the American Cancer Society page on Breast Cancer. 

It told me all about the things that would be done to me and that I would experience in the months to come.

Words like survivability now crept in and mortality.

Even before I saw the Surgeon, I had read about medical terms, procedures and chemical treatments I had never heard about before. 

I was profoundly amazed by how much information there was out there.

Some of it very bad. 

Then I saw that with the type of cancer I had and the stage I was told it was in, I had a 60% chance of living 5 years and if I survived 5 years without a recurrence, I had an 80% chance of living another 5 years.

60% ……

My God, I was only 53 years old.   I was determined to do all that was available and beat all the odds. 

I decided to take charge of this process and not be a victim of it.

When I met with the surgeons and the oncologists my next two words were “ Cure Me!   

But in the middle of the night I also whispered in my prayers to my creator two more words,  Heal Me”. 

People all over had my name on their prayer lists. In Christian churches, Jewish Temples and Muslim Mosques,  people were putting up my name in request for prayers of healing.   

Every month I went in for my chemo treatment. 

As the potions dripped into my body, I thought about the little molecules of chemicals searching out every cell of cancer and I envisioned the cells dying right before my eyes.  Cure me!” I thought . 

In my hours of treatment I also thought of the many scientists that had spent their life’s work seeking out the right formulation of chemicals that would know how to find that cancer cell and know just how to kill it. 

I envisioned a person in a white lab coat, late at night peering through a microscope or pouring over stacks of research notes muttering another two words “ That’s funny?.”

That moment of recognition that something in this experiment was different or unexpected. 

That moment may have been the very moment when the mechanism for killing my cancer was found.  The moment that meant I would have a better chance of making 5 years of life that might not have been there only moments before.

That recognition of something unusual by a scientist some where in some lab sponsored by donations from millions of people walking in walkathons and running in races in memory of those who have been taken by this phenomenon called cancer.  

Millions of people walked, ran and gave in honor of those who have survived this experience. 
Many gave in the memory of those who did not.

While I was in treatment, there was a “Race for the Cure” in Chicago. 
The company I was working for donated $10,000 and organized a team in my honor to walk in the Race.  
 

I walked too, 5 miles and between us we carried the names of over 200 people we were honoring who had survived due to the thousand of researchers and millions of hours committed to searching for that one moment when they would say two words “That’s it!”.  

That recognition of something different might prove to be the answer to the question about conquering breast cancer. 

March of 2005 was my 5 year mark.  I beat the odds.  I have two more words to say. 
Every day I think of two words for the people who worked to raise money and who donated to fund the research that had made those five years possible.

Those two words are “ Thank you” . 

Thank you for the sacrifice, generosity and charity given to provide more opportunities to say “ That’s it! 
Funding that answers the prayers of people who beg “Cure me” and “Heal Me”. 

So what have I done with the 61/2 years given to me since 2000?

I retired from corporate life.

I helped incorporate a NGO with the mission of saving the Monarch Butterfly habitat in Michuacan Mexico.

I helped an alternative high school in Chicago develop a plan to expand and grow so it could serve more children at risk with no where else to turn for education.    

I traveled Europe just for fun and been to China, Thailand, Taiwan, Singapore, India and Australia helping ministries and companies understand how to prevent catastrophic industrial accidents. 

I was appointed by the president and served as Chair and CEO of an agency in Washington, DC that investigates and promotes prevention of Industrial Chemical Accidents. The impact of this agency work has changed the culture of major corporations in preventing industrial accidents all over the world.

I have gone to India to work with an international body to highlight the problems still present in the place called Bhopal where hundreds of thousand of people still suffer from the impact of one of the world’s worst chemical accidents.   

I have seen my son married in Austin Texas and our daughter married in a castle in Scotland.

And I am awaiting the birth of our second grandchild, a girl named Caroline.

I have been with dear friends who are undergoing treatment for breast cancer knowing that they now have a higher chance for survival than I did because of improvements in the technology of treatment of breast cancer over the past 7 years.

But now I have another two words in my life.  Bone cancer”. 
My future and the futures of thousands of others rest in the hands of the researchers who are looking for a way to give us longer life. 
For people like me it used to be a 5% chance to live another 5 years. 
Now it is 20%.  That is not good enough for me. 

My two words now are”Please Give”.  My life depends on it. 

If I can, I would like to pass on my own story and the lesson I learned from my own experience.

Like many women for years I was told I had dense breast tissue.   

I was diligent in my own care.   

I was about 40 when I had my first mammogram because of the amount of dense tissue I had.   

Every year I went. 

We moved around a lot so every time we moved I got my mammograms and took them with me. 

I had breast exams at many hospitals including the Cleveland Clinic and a variety of community hospitals.   

Every year I was told that the lumps were dense tissue and were nothing to worry about. 

So I did not worry. 

At 52,  I began hormone replacement therapy. 

Over the next few months, I noticed that the lump in my breast was growing.   

I went to my doctor and pointed it out.  I even drew a line around it so she would know where I was feeling the lump now about the size of a small egg. 

She sent me for a mammogram.  The radiologist report said “dense tissue, benign”. 

Something kept nagging at me however and I went back a few weeks later and insisted we do a biopsy.

She did not think this was necessary but if I insisted she would give me the name of a surgeon.  I insisted. 

Taking my films with me, I met with the surgeon and he said it was nothing to worry about. 
He was 99.9% sure it was dense tissue but just to give me peace of mind he did a stereographic punch biopsy. 

On Friday, Feb 24th ,I got a call from him.  It’s Cancer” he said. 

What I learned from the second surgeon at the Lynn Sage Breast Cancer Center at Northwestern Memorial Hospital in Chicago was that from study of my past mammograms the cancer was at least 7 years old and it was what was called Invasive Lobular Carcinoma. Not rare but not common either. 

It grew like a spider into the surrounding tissue.   It was hormone receptive and although it had been slowly growing for all those years, the addition of estrogen to my system caused it to really take off. 

What did I learn from this? 

  1. Go to a center with a Specialty in Breast Health or Imaging Center.
  2. Don’t ignore any lumps.
  3. Mammograms do not detect every cancer and 12% can go undetected
  4. Insist on a biopsy or MRI of suspicious breast tissue not just needle aspiration.
  5. Get educated! Be assertive!

I have also found that my story is not unique.
Talk openly with other women about their experiences.
 

Help other women through the walk of cancer treatment and recovery.   

Every woman is at risk of breast cancer just because they are a woman. 
Help them recognize and take control of their own health care. 

Breast Cancer should not be the final two words in anyone’s life.  Thank you

 

 Carolyn was interviewed on 60 Minutes
      television program June 8th -
Watch
it now.
 About Carolyn:  click here  -- Video:  click here


It is with deep saddness... Carolyn lost her fight with cancer: August 29, 2008.  You were in her prayers, as I'm sure she was in yours.  She is that ray of sunshine that looks down on us from above, and our fight continues. 

 

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From Mike in Georgia, for Joyce:

In 2005 my wife Joyce and I found a lump in her left breast. She had always had regular check ups and mammograms and once the doctors became aware of the lump, they all said that it wasn't something we should worry about, that they would keep an eye on it.  So we took them at their word.
 
Right after we were married, Joyce had both of her kneecaps removed, so for many years she has learned to live with pain in her legs.
 
In January of 2007 she was at work one day and she started literally crying from the pain in her legs.  She works in an orthopedic surgeons office, and the doctor came into her office and told her "we have to find out what is causing this pain".  I love that woman, she had to have pulled some strings because within 5 days we had 4 different scans and a bone marrow biopsy done.
 
After the first scan the radiologist came out and told us that he had bad news, that they had found cancer in her bones.  There were spots in both her legs, her pelvic area, in her ribs on both sides, her shoulders, and one on her head.   He told us that we needed to find out what kind of cancer it was, and that hopefully it would be multiple myeloma, which could be treated and cured he said.
 
After several different scans and a bone marrow biopsy, we were told that it was Breast Cancer that had metastasized into the bones.
 
I don't think I could ever fully understand what Joyce must have felt when we heard those words,  But for myself, I was devastated.  I felt like I had just been told I had lost my wife.  I felt more scared than I have ever felt in my life. 
 
Right after that, they removed the lump from Joyce's breast.  The surgeon said that rather than put her through the pain and the long recovery period involved if he were to do a complete mastectomy, that "since the horses were already out of the barn" so to speak, he would just remove the lump. 
 
Now my fear gave way to the anger.  I was so mad that our primary care physician, and Joyce's gyn, and who ever had been doing the regular mammograms that she had been having done over the past years, none of them had done anything, even though she and I had found the lump over two years ago.  It was always "we'll keep an eye on it and if anything changes we'll check it further".
 
If only I had known then, when we first found it, what I know now, I would have been screaming at the top of my lungs for them to do at least a simple needle biopsy on the lump, and if they had refused I would have found us another doctor that would do it.  If they had done that back when the lump was first found, we might not be where we are today. 
 
After the anger, came acceptance.  Ok, we've been dealt this miserable hand, now let's do what ever we have to do to play it out.  After talking with our oncologist we decided to go on a drug therapy program.  Besides the two or three pain medications we were taking, we started on a drug called Femara.  After being on that for 12 weeks, and dealing with all the terrible side affects, the worst being the nausea, we had another scan done to see how the Femara was working against the Cancer.  It wasn't !!  There were new spots of cancer in the bones. 
 
Now we had to make a choice, of either continuing with the Femara to see if it would start working, trying a different drug, or going into an aggressive Chemo therapy program, possibly one which would include being in a test group with one of the newer Cancer drugs.  Turned out that we couldn't do the test group with the newer drugs because the Cancer was not in any of the soft tissues or any organs.  Being in the bones only, they would be unable to accurately measure the effectiveness of the new drug, due to the fact that when it is in the bones, they are unable to measure any change, its either there or its not. 
 
So we wound up on just an aggressive Chemo program, where we got two drugs by IV on a Friday called Carboplatin and Gemzar, then the next Friday we just got the Gemzar, and then the third Friday we would skip.  The we started the cycle over again the following Friday. 
 
We went through six weeks of that and then we did another scan to see how the Chemo was working.  The good news was no new spots in the bones.  So the Chemo seemed to be at least holding the Cancer in check for then.  Since we are dealing with Breast Cancer in the bone, which is not curable, it means that we will be on some kind of treatment the rest of Joyce's life. 
 
We went six months on the Chemo program, during which time Joyce lost all of her hair.  But it has grown back in now and is more beautiful that it was before.
 
At the end of the six months, the oncologist told us that he thought we should give Joyce's body a break, let it recover some, and try another drug treatment.  So we started taking injections in the hip once a month, instead of the IVs every week. 
 
The last scan showed no new spots anywhere, so for now the injections of Faslodex are keeping us stable. We will stay on that until it quits working and then we will try a different drug.
 
I just want every woman that might read this to make sure they get their regular checkups.  And if ever there is anything found, and the doctors say they will keep an eye on it, insist that they at least do a needle biopsy on it. 
 
Early detection can save your life, but only if they follow through after finding something.  If they don't want to do it, tell them you are going to find a doctor that will.
 
I want all of you survivors out there to know that I have committed myself to doing everything I can to help find a cure for breast cancer.  This will be my second year to do the Susan G Komen for the Cure 3Day 60 mile walk, to help raise funds for research.  I will be doing this walk every year from now on, not only for my wife but for you, until they find a cure.
 
God Bless and watch over you all. -- Mike http://jagsangels.webs.com/
 

Kelly Corrigan

A friend sent this uplifting YouTube video, we hope you will enjoy watching and listening to these wise words...

VIDEO:
  http://www.youtube.com/watch?v=u_4qwVLqt9Q

Kelly Corrigan:

www.kellycorrigan.com
http://www.circusofcancer.org/about.html


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Pat's Music for Strength!

Pat wants you all to know that upon starting her chemo, this is her theme song, and she hopes it helps you, too:

Bonnie Raitt singing:
"I Will Not Be Broken"
click here

Please read Pat's Breast Cancer Journey blog:  click here
Writing Outloud to Survive and Flourish!


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Breast Cancer Stories.org

 To read some wonderful and uplifting breast cancer stories, please visit this website:

BreastCancerStories.org

 

GoodSearch: You Search...We Give!