Saturday, June 27, 2009

Yolanda P., 8-Year Survivor after Double Mastectomy

Yolanda,

Thanks for sharing your story. So glad to hear that you are still cancer-free.

I, too, was astonished to find out just how many friends I had when I was first diagnosed with cancer. It was simply amazing how everyone at the hospital where I worked came together to take care of me and my family. We are blessed!

Even though you recovered nicely from your surgery, I am dismayed to hear of your "drive-through" mastectomy. In the past several years there have attempts by some lawmakers to pass a law that would prevent insurance companies from sending mastectomy patients home in less than 48 hours after surgery. This bill, called the Breast Cancer Patient Protection Act, unfortunately has yet to be approved by Congress. Read more about it here.

Kim


The week before Christmas in 2001 I was sure I was too busy to have my mammogram done. After all, Christmas was a week away and I needed all the extra time I could squeeze into my hectic schedule. Something from within told me that I could not skip a year because I had the procedure each year. I made the appointment and went on my lunch hour. Nothing had changed, chance into a gown and get positioned in the machine, hold your breath and snap. Nothing to it! I never gave it a second thought.

It just happened I took time off from my job during Christmas through New Year's. The week after Christmas I got a letter that I was sure was the survey form to see how I rated the mammogram experience and almost tossed it into the trash. Then...I remembered that I had the test and it might be something I needed to read. Boy did I need to read! The letter said I was scheduled for a diagnostic mammogram that week. Diagnostic, hum, I thought that was something mechanics did to find problems with cars and trucks.

The day I went for the diagnostic mammogram my husband went with me. We waited and waited till they finally called my name. I walked into a small room that had film from my first mammogram up on every lighted wall and I knew I was in trouble. The radiologist was there and suggested I have a biopsy. A BIOPSY! Then I knew for sure it was serious. I scheduled the appointment at the clinic for the next week.

After returning home that day I realized I didn't want to do a biopsy before seeing a breast specialist. They were able to get me in immediately which was wonderful. My new oncology breast specialist said she thought we needed to do a core biopsy. My doctor said the spot was small but didn't look right. I was able to have the test done the next day. I didn't have time to be scared or upset because everything seemed to be going so fast. My doctor called me after the test and said "it is cancer." She said it was little but nasty, stage III. I called my best friends at work and asked them to please talk about it before I got back and that I would be fine. I got back in my office and everyone from the entire building came one by one to my office and offered words of encouragement and prayers. They were all obviously upset but I told them that it would be all right...God would see me through.

Then the hard part...telling my family and family friends. I immediately drove to my husband's office and told him the news. He did not seem surprised just as I had not seemed surprised. I will never forget the look on his face. The look of not being able to take care of the situation himself. We left his office and drove to see our daughter. She was excited with her Christmas tree and all the decorations in her lovely home. She was walking over to sit down in a chair and stopped dead still turned around and said "This is about the tests." I assured her that I was going to be fine and it was okay to be upset, get over it, and lets get on with getting the cancer out and off my body.

My mind kept going back to treatment options...what are treatment options!?

My husband, daughter and I arrived at the office at 4:30 p.m. and left at 7:30 p.m. Every question was answered before we could asked. My doctor was beyond belief. She took her time and explained the different types of breast cancer and different treatment options available for each type of cancer.

About half way through the meeting I had the "answer" of double mastectomy. What was I going to tell my friends, the men at my office, what were they going to say. The next morning when I got to work the first person I met in the hall was a man who was a good friend. He asked me "Surgery" and I said yes. "Little surgery" and I said no big surgery. He cried. The next person I met that morning was another man I had worked with for many years and he asked the outcome of my meeting with the doctor. I told her and he cried. I knew then that I had the support of the people I worked with.

On February 3, 2002 at 1:00 p.m. I was in surgery. The surgery was four and one half hours. I had very large breasts and it just took a long time to do it right. I was in recovery for about thirty minutes and then taken to a room for the night. My dear husband stayed with me. By midnight I was up and he was walking the halls with me and making me drink lots of fluids. By 9:00 a.m. on February 4 I was at home. I was fast to give God the honor, glory and praise for all that had taken place. He never left me, He was with me all the way.

I didn't have pain instead I was sore, found it difficult to find a comfortable to get in bed and nerves that were cut were twitching. I had drain tubes which were not comfortable but I learned to deal with them. I had to depend on my wonderful husband for help washing my hair and dressing but he did an excellent job! Also my sister came and stayed with me for a week. It gave us a time to sip tea and visit, read our Bibles and pray.

Never do I want anyone to go through cancer. It is not fun nor easy. However, by going through it I am a different person. A much better person. I take my time at living my life. I don't take people for granted, I tell them I love them and how much they mean to me. God has truly blessed.

I went back to work two weeks after surgery and my Friends at work were more than willing to help me and they were sure that I did not pick up anything heavy.

I kept a bag with cards in it from friends. I counted the cards before I went back to work and I had 364 cards and letters. I didn't know that I knew that many people! From time to time I still get them out and read them.

God has blessed me with a cancer ministry. I hear of someone with cancer I get on the phone and encourage them. I send them cards every other week. I pray with them on the phone and I pray for them daily. My cancer friends are true friends. We are joined by a terrible disease but we will not give in or stop helping others. The relationships are closer than close.

I retired two years ago because of other health issues and I am still cancer free, Praise the Lord for healing me.

I know that I could have cancer again at any time. For right now I take one day at a time and do not think about what if the cancer comes back, instead I think of ways to help others make it to the healing side.

Thank you for reading my story.

Thank you,
Yolanda P.


ADDENDUM from Yolanda:
I never thought anyone would read my story!

Thank you for reading my story. I understand how overwhelming it was for you when friends started to offer their help because I felt the same way. I pray you are still cancer free.

I have written my Legislators regarding the drive through mastectomies that are done each day. It is hard enough to deal with cancer but to be sent home with drain tubes, pain and mentally wiped out.

I didn't tell you in my story that I have a cancer ministry, and I call it "Celebrate Life." I have about 100 people in my cancer friend book at all times. Those with breast cancer I send a package with fun pink things...things that might give them a smile. The other cancer patients I use the cancer by color to send them things I can come up with. God has truly blessed me. I check our your site to see what is on sale but I do this ministry by myself so I cannot afford all the things I would love to send to each breast cancer patient.

Thursday, June 25, 2009

A Milestone in my Cancer Care

Hello all! Today was the first time that my husband, Danny, administered my monthly Zolodex injection. He did a GREAT job! Instead of the two of us trekking down to MD Anderson, waiting often times for hours, receiving the injection from a sometimes-competent nurse, then being charged an exorbitant amount of money for this process ... he gave me the injection in the comfortable surroundings of home, on our sofa, using perfect technique and causing no pain or bleeding!

He was nervous, and so was I! After all, I'm the former-nurse -- not always the best patient, I admit. He has no medical background except that he's witnessed this injection being given to me every month for the past 3 years. If you're not familiar with a Zolodex injection, let me tell you it's no walk in the park. I have experience self-administering with Neupogen (subcutaneously) while I was receiving chemo in 2000. The medicine burned going in, but the needle was tiny, so it wasn't that bad. With Zolodex, it's a pellet, about the size of a grain of rice, that gets injected. A pretty large-bore needle! I'm usually not squeamish ... though I've always really really hated needles ... but it's too big for me to even watch, and I always watch my needlesticks.

Anyway, after three years of watching the good, the bad, and the just plain incompetent administer this big-daddy-of-a-needle, we both knew that Danny could do a better job. And he did!

It took a little work on my part to get the medication from the pharmacy. Evidently this is not something that is self-administered very often. It's actually not yet a done & regular deal: insurance told me that I would pay just my regular Rx copay, $25.00; CVS charged me $100 and told me that next time it would be almost $400. I totally don't understand this, and I wonder why you can't get a straight answer from insurance companies.

But all in all, a good day and a small step towards some kind of little freedom and a savings of probably thousands of dollars for staying home today with my own personal "nurse."

Thanks for reading ...

Nancy H., Diagnosed While Pregnant - Now a 29 Year Breast Survivor!

Thanks for sharing your story, Nancy. It should definitely shed some hope on the under 30 survivor crowd. I am ALWAYS inspired by long time survivors. I hope to be one one day myself!


At the "Ripe OLD AGE of 26", while pregnant with my third child, I was taking a shower and noticed a little lump in my left breast. "Oh my Goodness, what is that?" I thought to myself. "It must be a plugged milk duct or something". During my next doctor visit, I notified the doctor of the lump (about the size of a pea). He told me not to worry, but we'll have it checked out anyway. He sent me to a general surgeon who took needle biopsy after needle biopsy, telling me that it was negative. I was six months pregnant at the time.

As I got closer to having the baby, the "cyst" went from the size of a pea to the size of a golf ball in the matter of three months. I delivered my baby in March of 1980, they came and told me I couldn't breast feed him. The "cyst" was malignant. Here I am, 26 years old with three children, age(s) 2, 4 and now a newborn. They told me that It was a slow growing cancer, but If I didn't have it taken care of, I would probably be dead in a year. How's that for a reality check?!

How could this be? I thought breast cancer only happened to women over 40 or 50 years old. NOT SO!

I, however, was a lucky one. Through my self-examination, and knowing my own body, the cancer was detected early enough to be treated by a modified radical mastectomy. Since then, I have lost my Cousin (in her mid 40's) to breast cancer. I also fear for my Daughter (now age 33), but she knows the importance of doing her Self-examinations and having her mammograms done yearly.

I am 55 years old this year and I Praise the Lord, that I have been able to see my children grow up. I now have (3) Grand-Daughters who will also be educated in our family history, so that when they become adults, they can also be aware of this horrible disease, and hopefully prevent anything serious from happening to them.

Every year, since 2001, I participate in the "Horizon of Hope" - sponsored by The Longaberger Company, which raises funds for Breast Cancer Research and Awareness Programs. This is their 15th, year raising more than $14 million dollars for the American Cancer Society to date. As a Longaberger Consultant, I feel that it gives me a venue and a "mission" to promote Awareness and the importance of Early Detection. I am a true believer of self-examination and "Together, we CAN Make a Difference"!

Thank you for allowing me to tell MY story. (For more information on the Horizon of Hope, go to www.horizonofhope.com or www.longaberger.com/nancyhuntsman )

Sincerely,

Nancy H. - Newfane, NY
(29 Year Breast Cancer Survivor)

Sunday, June 21, 2009

Mary W., 56 y.o. 12 Year Survivor

Hi Mary,

Thanks for sharing your story.

First of all, what a jerk your husband is! Ok I just had to say that. But you know, everything happens for a reason and God is in control of everything. Glad you are able to see the positives that came out of you having cancer.


My name is Mary. I am 56 and a 12 year surivor of breast cancer. I have also been divorced for 12 years since my husband and father of 2 of my children, told me the day I called him to tell him my diagnosis that he wanted a divorce.

My children were 7,9 and 17 at the time of my diagnosis in September 1996. My youngest was scared and my 9 year old, a daughter with Down's Syndrome, didn't understand it. My oldest was so afraid he would lose me. After being reassured I would do all the doctors told me to, and have lots of help from families, friends and our faith, they calmed down. It was so difficult initially to imagine going through surgeries, chemotherapy and radiation alone but I was never alone. My mother and step father stayed with us for several days after each chemo treatment. I saw this time as a time of opportunity, special times to get closer to my three children and they to me as well as their grandparents. I was able to volunteer in their classrooms when I was between treatments and feeling so much better. Even at my weakest, my children would come home from school and climb on my bed telling me about their day and at night when the "alone-ness" was felt they would check on me, put my music cassettes on to help me sleep better.

I had a wonderful book given to me by my oconologist that had survivors stories and quotes in it and my favorite was about this disease affecting my body and mind but not my spirit. I tried so hard even when my hair was falling out, to keep a positive spirit. My wig wasn't a reminder of my cancer, but that I looked pretty hot as a redhead! I continue to encourage friends who are going through cancer and give them some of my helpful hints - anything to make it a little less frightening. Probably the best thing I did was to have a port installed for the chemo and the blood draws....I was fortunate to have the chemos given in my home by the nurse.

I came through it all with a better more confident sense of myself. I see myself as brave and know that I simply did what I had to do. My 3 children are all remarkably loving, kind, patient and involved in giving back to the fight to find a cure for cancer. Although at the time of the divorce I thought it was horrible, it actually was a decision I am thankful for now.

Thank you,
Mary W.
Palm Springs, CA.

Saturday, June 20, 2009

Keep the Survivor Stories Rolling In!

Hello all, Kim here. Just wanted to thank all the ladies who have submitted their survivor stories to be posted here on The Pink Ribbon Shop's blog. The response has been overwhelming! I am working hard to personally respond to each of you before posting your story to the weblog. Thanks for your patience!

Clearly there are many breast cancer sisters out there who believe, as I do, that it's helpful to read the stories of others who have also journeyed through breast cancer. We are happy to have the opportunity and means to facilitate this survivor-to-survivor communication. Feel free to leave your comments and questions. We would love to hear from you!

I am also receiving feedback on how helpful it is to actually write one's story. One survivor mentioned that, until she wrote her story for our blog, she hadn't told her entire story to anyone but family. She thanked me for the opportunity. I know, from my previous online journaling experience, how writing helps you organize your thoughts and feelings about what's happening to you and what you're going through. It just feels good to vent and get it out there!

So please, keep the survivor stories coming! Let's make this blog the place for the newly-diagnosed to long-time survivors and everything in between to turn to for inspiration and information on breast cancer from people who've been there.

Thanks so much for reading ...

Mary Ann, 18-Year Survivor!

Thanks for sharing, Mary Ann. I am always inspired when I hear from long-time survivors ... 18 years ... Love it!

I will be a 18 year survivor in Dec. 2009. Doesn't seem that long and I can remember it like it was yesterday. Everything went so fast but I wanted it out for sure. My family was there for me but I had boys (23 & 18) so it was different on them as well on me. My husband was a real sweetheart, taking care of me. I knew he was having trouble with this when I got home, he wasn't sure if he could look at my scare, but then he did and he was the best husband I could have as support. It wasn't always easy but I had what I call Mild Chemo or CMF, never forgot those letter !

I was a school bus driver so I got my chemo on Friday and went back to work on Monday. Everything was great until I passed up one of my stops, then I realized I couldn't think of anything but my route and not what was I going to have for dinner ! It was scary but I found a wonderful support group and that helped me understand so much. I learned everything from Chemo Brain, problems with vision at night ( which comes back after chemo), how to get though the day with emotions you haven't had before, to wondering when this was all going to end. It never ends as you see your oncologist every year and we all get nervous.

One thing about Cancer is life gets better in ways you never imagine. I have met so many special people that I have been so blessed. The survivors are the best but I got lucky 1998 at the Detroit Race for the Cure, Olivia Newton-John was there and I standing at the right place at the right time, she grabbed me for a photo for the Ford World newspaper. Well, they liked it so well, that out of 200 pictures, they pick our picture and it was on the front page !!! Then at a Survivor luncheon, we got to have our picture with Linda Carter ~~~ Wonder Woman !! When we moved to Florida in 2003, I went to the first Race for the Cure which is in first one of the year in West Palm Beach. It was so exciting, I got to meet Nancy Brinkler the founder.

THEN I got to be in a book that was published by Barbara Delinsky, she sent e-mails asking for input from Survivors. It is called "UPLIFT" and easy to read and all kinds of simple and helpful hints on how to deal with your cancer from start to finish. She published 3 versions and I am in it 4 times.

This is from the book, in the part on how men felt ---
"My husband's first reaction was shock. He felt lost, not knowing what to say or do. Then he sat down with me and told me that it didn't matter if I had one or two breasts, because that's not what he married me for. He told me we would get through this together. He took me to chemo treatments and made dinner when I couldn't --- and he's a good cook ! When I came home from the hospital, he didn't want to see my scar. This scared me a little. Then, the day he did look at it, because he realized what it meant to me for him to see it. Then there was the day he touched it and found it to be just fine.

Cancer is tough stuff, but LOVE is stronger."
I was diagnosed at age 44 and I am now age 61 almost 62. I thought I would never see the day that I would be on Social Security but its coming !!!!
Cancer may take away but it gives you more opportunities then you can ever imagine !
Hang in there my Survivor Sisters !!

Mary Ann B.
Rotonda West, Fl.

Karena, 35 y.o. with Triple Negative Breast Cancer

I just finished reading/responding/posting Kristy's story (see previous post,) who said she was thankful for all the treatment options that are available now, and I wholeheartedly concurred. But unfortunately for the writer of this next survivor story, and many others, triple negative bc hasn't been so fortunate. From the Triple Negative Breast Cancer Foundation's website:

Understanding Triple Negative Breast Cancer

It is now commonly understood that breast cancer is not one form of cancer, but many different "subtypes" of cancer. These subtypes of breast cancer are generally diagnosed based upon the presence, or lack of, three "receptors" known to fuel most breast cancers: estrogen receptors, progesterone receptors and human epidermal growth factor receptor 2 (HER2). The most successful treatments for breast cancer target these receptors.
Unfortunately, none of these receptors are found in women with triple negative breast cancer. In other words, a triple negative breast cancer diagnosis means that the offending tumor is estrogen receptor-negative, progesterone receptor-negative and HER2-negative, thus giving rise to the name "triple negative breast cancer." On a positive note, this type of breast cancer is typically responsive to chemotherapy. Because of its triple negative status, however, triple negative tumors generally do not respond to receptor targeted treatments. Depending on the stage of its diagnosis, triple negative breast cancer can be particularly aggressive, and more likely to recur than other subtypes of breast cancer.

TNBC Foundation is devoted to finding targeted treatment for triple negative breast cancer.





Hello,

I found your website while trying to find some items to buy. I am a breast cancer survivor and saw you are looking for stories. My story was posted on the Triple Negative Breast Cancer site so I am attaching my story I told them to this email. I am still recovering from side effects from the chemo and my masectomy I had on Mar. 17th. I am a big advocate on telling people about the type of breast cancer I have since it is just now being talked of more. Susan G Komen just this past December (2008) gave grant money to help with the TNBC foundation to do more research on triple negative breast cancer. Hope my story can be of help to someone through your site.

Thanks!

Karena J.

My Breast Cancer Story
My name is Karena and I was 35 when I was diagnosed in June 2008 with triple negative breast cancer. I found the lump myself in March 2008 when my right breast began hurting. I put off going to the doctor because I had just had my annual pap exam in November 2007 and was told that everything was fine when my breasts were examined. I thought, "Well it is just something that will go away." In June I had an appointment with my primary care doctor and had not planned on mentioning the lump but something came over me and I ended up telling her. She set up an appointment for me to get a baseline mammogram. The next day, I went to see my OB/GYN. I mentioned the lump to her also and she advised me to get a mammogram and ultrasound right away. I was able to schedule an appointment for the following week. I knew something wasn't right when the ultrasound technician was quiet and went and got the doctor to look at the results. From there on it has been a whirlwind for me. My OB/GYN sent me to a breast specialist who did her own ultrasound and informed me that it could be cancer. In my heart I knew it was. I have a strong faith in God and I felt He had prepared me for all this beforehand because after the biopsy was done and I was told I had cancer, I had peace and knew God would be with me. I was told I had invasive ductal carcinoma grade 3 cancer and was told it was triple negative. My mom and I asked what that is. The doctor told us it affects mostly young African American women and it is an aggressive cancer. We researched and did not find much information about this cancer. We felt good about my breast oncologist because she seemed to know enough about this type of cancer and she was being aggressive in my treatment and setting me up with a good chemotherapy doctor. I had a lumpectomy with sentinel node biopsy done in July 2008. After the surgery when I was awake my doctor told me that I am stage 2 and that my tumor was bigger than she thought - it was a little over 4 cm. She also said that there was another small tumor starting that was .4 cm. I thought to myself, "Man this type of cancer is no joke!" My doctor never even saw the other tumor back in June and she thought maybe it started growing after she did the original ultrasound. I began chemotherapy on August 18, 2008. I had 4 bi-weekly rounds of AC which really took its toll on me. I volunteered to participate in the Avastin/placebo clinical trial so that was being given also. Right when I was to begin my Taxol/Avastin/placebo rounds in October, I got sick with a bad cold. I had to take a week break from chemotherapy and then they started my weekly chemotherapy of Taxol/Avastin/placebo on October 21, 2008. Before they started the treatment, they had me do another muga scan to see how my heart was after the AC treatments. Well, my rate went down to 51. They went on and started me on the Taxol but also had me do another muga scan in November. I had to do 12 weeks of Taxol and I stayed sick and very fatigued the whole time on Taxol. After my muga scan in November came back, the results showed my heart rate dropped even lower to 42. They took me off the clinical trial chemotherapy and I just did Taxol. I had to do another muga scan at the end of December. Those results were a little better; they were 46 but still low. I have to do another muga scan in Feb. 2009 to make sure my heart is better and can handle the surgery I have scheduled for March. I had to quit the clinical trial because of my heart not being normal. My last Taxol treatment was Jan. 20, 2009. I was glad to finally be done with chemo. The five months of chemo did take its toll on me, I got a lot of the symptoms and stayed sick a lot, but I knew I would get through it with the great support of my friends and family. I am going to have a double mastectomy in March 2009 with reconstruction. I talked with my chemo doctor and breast oncologist about it and, since they said people with triple negative had a high risk for recurrence in other breast or other parts of their body, I chose to do the double mastectomy. I feel if I can do something to help and try to prevent a recurrence I want to. I know that I still can have a recurrence in other areas of my body but I now am trying to focus on getting through this stage of cancer. I am thankful for finding this site when I did; it gave me insight about triple negative disease and helped me ask more questions to my doctors about this cancer. Now what I do is tell people about breast cancer and the type I have. I inform friends and family to stay vigilant in checking their breast and getting their mammograms. I feel that I got this cancer for a reason, maybe to help someone else going through it or to be a role model to someone. Only God knows why I got this cancer at such a young age but I know He is with me through it all. I was worried about my 7 year old son and how he would handle it, but he has been great through all this. I included him in some appointments so he could meet the doctors and see what is being done to me. My son has actually helped me get through the bad days with his continual care for me. I just want others who are going through this to know that they will make it through, to not be afraid to ask your doctors questions, and to have FAITH and be STRONG. I know there is still a long road ahead of me, but I am grateful for the blessing of great doctors, friends and family support. If someone doesn't have support you can find it here on the triple negative foundation site. I did meet someone here on the site that is a couple years older than me and our treatment schedule is almost exactly on the same time frame. We have been great encouragement for each other and have formed a friendship also. This is proof that there is support here on this site. Don't give up and remember "We are all beautiful, strong women, no matter what we are going through!"

Kristy, 37 y.o. Stage II, Thankful for modern medicine!

Kristy,

Thanks for sharing your story. I feel blessed, as well, that there are so many treatment options nowadays!

I have 3 daughters, and a mom and sister whom I worry about so much. It's what the pink ribbon campaign is all about ... promoting awareness, early detection, and ultimately finding a cure!

Thanks again,
Kim
I'm a survivor!
My name is Kristy, I'm 37 and was diagnosed with stage 2 breast cancer on 8/8/08. On 8/15/08, I had a mastectomy of my left breast. I went through 4 session of chemotherapy, am currently receiving 52 treatments of Herceptin and will soon begin my 5 year stint of Tamoxifen. I'm currently awaiting my reconstruction surgery. I have a wonderful support system and truly feel blessed that my cancer was found at a time when we have so many different therapies available. I've been and will continue to be active in American Cancer Society and Susan G. Komen for the Cure. I was captain of a Relay for Life team and will be walking in the 3 day Susan G. Komen walk in San Francisco this year. I will do all that I can to help raise money for finding a cure for breast cancer. I DO NOT want my 10 year old daughter to go through what I have.

Friday, June 19, 2009

Mary, 55-y.o., has Gift of Reaching Out to Others

Mary,

Thanks for sharing! I admire your unselfishness and dedication to helping other women with breast cancer. Rock on! (as my doctor always tells me.)

I, too, look forward to the day when all women don't have to fear getting breast cancer. One day a cure will be found, and we'll look back on this pink ribbon campaign fondly, knowing that we helped fund the fight for a cure. Pinkribbonshop.com and the others will go out of business because there will be no need for pink ribbons. Until then, we can spread the word of the importance of monthly breast self exams and yearly mammograms.

Thanks again,
Kim


On June 11, 2004, I was diagnosed with breast cancer. I was 55 years old. My mother was diagnosed with breast cancer at 55, but lost her battle at 57. This June I will be 60!!! After the shock, I was determined to fight the fight. I had chemo, mastectomy, reconstruction and radiation. 2 weeks out of treatment, I did the Avon Walk for Breast Cancer. I made it all 39.3 miles...this year was my 5th year to walk 39.3 miles! During the last 4 years, I have been very involved with Avon Foundation, Army of Women, the American Cancer Society. I have reached out to many women, offering hope and encouragement..helping them to walk the walk..helping them to keep a positive attitude, giving support, a big dose of humor, lots of prayers and lots of love.

I have been lucky enough to be on the cover of the brochure for the Cancer Center where I had my treatment. My "story" was used in their annual fund raising letter. I was interviewed by a Boston TV station during one of my Avon Walks. I have been asked to be a speaker so that I can tell my story to others. I have a web site www.roisinbcsite.com.

God has given me a very special gift, a gift of reaching out to others...and I find these people in all kinds of places.....grocery stores, pizza take out places, even bathrooms!!!! I have been given the chance to meet so many people, all with different stories of their journey in this battle. The friendships I have made have enriched my life and given me even more reasons to be there for as many as I can...to keep fighting to rid this world of this devastating disease....to make sure that our children, grandchildren, relatives, friends, will never have to be "Survivors". They will be "Cured".

I have a niece, 39 years old, who has just been dianosed with aggressive, invasive ductal carcinoma which has metastasized to her liver. They have given her the "numbers" 3-5 yrs. She has a husband and 2 daughters....how many times have we all heard these stories...how much longer will we HAVE to???? How many more lives will be lost? How many more families will be left without someone they love?

The call to end Breast Cancer is NOW!! Promote early detection..it does save lives. Walk, donate time or money, join the "Army of Women"......be aware of what's going on in our legislature.

Love and Peace,
Mary Roisin

Casey, 32-y.o. Stage IV, "Cancer Free"

Casey had the full array of treatments for her stage IV breast cancer, although the lung biopsy proved inconclusive. Here's hoping that the questionable lung area was just a shadow, or the like!


This is mine –

I’m a one year (and counting!) stage IV breast cancer survivor… that began w/ a routine doctor’s appointment. I gave birth to my second son in September 2007 and four months later, almost to the day, was diagnosed. I was 32 years old and not completely surprised, given the fact my grandmother passed away from “breast cancer” at age 52 (as a 2 time survivor.) At the time of my biopsy of lumps in both breasts and left side lymph node, I knew it wasn’t going to be good news. But I wasn’t at all prepared for the news that the cancer had most likely spread to my lung. The lung biopsy was inconclusive due to the location of the questionable areas. We proceeded as if I had metastatic breast cancer to the lymph nodes and lung. I did the whole kit and caboodle of treatments: first, chemo, then a bilateral mastectomy w/ expanders, radiation, reconstruction surgery, and lastly, a full hysterectomy as I am positive for the BRCA II gene.

During the second opinion clinic where I found out about the suspicious spots on my lung, I let myself wallow in self pity for about 10 minutes… my biggest feat, so I thought, would be losing my hair and as everyone tells you, it does grow back! God cleared this path for me for a reason and I couldn’t change my circumstances – so, I moved on and ahead! And my biggest feat wasn’t losing my hair, but rather dealing w/ a new status of having a “pre-existing” breast cancer diagnosis and finding decent affordable healthcare coverage as a wife of someone self-employed. And that’s not so bad considering what I’ve been through over the last year and a half! I’m a very open and positive person who puts all her concentration on her two sons (and husband) and living life in every sense of the word! J I am truly blessed in so many ways!

Today, I am cancer free. I owe it to a fantastic medical team, supportive friends and family, prayer and positive thinking, and the drug Herceptin!

Best wishes to those who share a similar story,

Casey Martinez

Wednesday, June 17, 2009

Young Survivor Wendy H. Finds her "Inner Pink"

Wendy H. sent us the following email about an experience she had with a young man who has obviously had a sheltered life with no strife, and evidently has never known anyone with cancer. Way to go Wendy!

Dear Pink Ribbon Shop,

I have attached an account of an experience I had this past Mother's Day. It was the first time I ever been "challenged" as a cancer survivor. Up to that moment I had avoided referring to myself as a survivor, but the vehemence of the attack really brought my "Inner Pink" to the surface.

I have been looking for the right venue to share my story with. My husband thought I might submit it to a womans magazine or perhaps, MAMM magazine. But something about your email touched my heart and if sharing my story can help someone to find their survivor voice, then I know I made the right decision.

Thank you for your consideration. I love your website!




Awakening early on Mother's Day, my husband offered to take me to our local bagel shop for a quick nosh before beginning our family celebration. The courtyard was full of people and families. We picked a table outside in the sunshine and began a conversation with the table next to ours, a mother and son. She was wearing a pink ribbon visor and since it was the day after The Susan G. Komen Race for the Cure in SLC, we struck up a conversation about the event and the general feeling of camaraderie experienced there.

This led to a deeper discussion of the 'what kind of cancer' and 'how long ago' variety. We discussed type and length of treatment, family history, and swapped our surgery stories. At some point a younger couple came and sat just behind me at a nearby table. Deep in conversation with my new friend, I did not notice them. Suddenly the young man stood, confronted us, and began a loud barrage of protests at our conversation. He told us he was disgusted by our talk and outraged to hear such a discussion on Mother's Day. I told him he was obviously eavesdropping, could go inside if he didn't like it, and was completely missing the point. After more heated words, he did go inside.

My new friend and I determined we would not let this ruin our celebration and began to visit again. A young mother who was at the far side of the patio and had obviously witnessed the attack walked over to us. I quickly apologized if we had offended her. And then the most wonderful thing happened. She leaned over to us and said, "Way to go - I'm part of the Sisterhood too." She is a five-year survivor and, with that single sentence, an example of what could not, should not, be shut out. If we don't talk about it, if we don't share our experiences, we have not truly celebrated our survivor-ship. After a quick hug my new friend and I parted with words of encouragement and love. I went home to my children, and celebrated the most meaningful Mother's Day yet.

Sunday, June 14, 2009

Survivor Story - Monica M., Age 36

Thanks for sharing your story, Monica. I can relate to many aspects of your story, since I was 32 with 3 kids (12, 2 & 6 mos) when I was first diagnosed. And thanks for the touch of humor ... you can't get through this journey without it.

Kim

My name is Monica Malone. I am 36 years old. I am a wife, mother, daughter, and friend. I live in the middle of no where better known as Proctor, Arkansas. My husband Randy and I are the proud parents of Lyndsey, 18, Taylor, 11, and Mason, 9. This is my story.

The fall of 2006 was forever life-changing. My mom was dying of pancreatic cancer, and my daughter was turning 16. I found a lump in my breast. I knew instantly it was cancer. I was 33 years old. Who has cancer at 33? I did. Within a matter of 6 weeks, I had a biopsy, a mastectomy, a port placement, my 1st chemo treatment, and slept through my daughter’s 16th birthday.

Pink became the family’s favorite color. Not red, but pink. The color of survival. The color that gave us hope. I had fears to face. Pink became my armor. Chemo was my first fear.

I was scared to death to face chemo. Yes because of all the side effects of chemo…hair loss, nausea, vomiting, the loss of my “normal” life, but more so that I was going to be with old people who were ready to die. I was only 33. I was not ready to die. I soon realized how much I had in common with the others. We were all fighting to live. I then had to face the fear of how my children would deal with me being sick from treatment. I was their mother, the taxi driver, the baker, the social secretary. What was going to happen? My family happened. My husband became the taxi driver, my daughter the social secretary, and my boys remained boys. I learned that no matter how weak the chemo made me, I was just as strong a mother from the couch as I was in the driver’s seat.

My next fear was radiation. Were they going to give me too much? How bad was it going to burn me? While radiation was not as harsh as chemo, the sound of that heavy door closing was enough to shake any one’s soul. But with every slam of that door, I was one step closer to being deemed cancer free.

Throughout this journey I have learned my share of lessons. Cancer does not mean death. Kids are resilient and cope better than many adults. Friends you did not know you had become the ones you cannot live without. Wigs are hot and no one will tell you it is crooked.

I am a simple person. I do not ask for lavish things. I love God, my family, my friends, my life. As you read my story, I hope that you this with you. Do not use cancer as an excuse. It is not. So what if you sleep through a birthday party. Who said that you could only have one party? Do not let cancer rule your life, rule the cancer. Use it to your advantage. Talk to people, tell them your story. They might need to hear it. Better yet, you might to need to hear theirs.

I am now finished with chemo, radiation and 42 weeks of Herceptin. I take Tamoxifen everyday. My cancer markers are within an acceptable range. I have shoulder length hair that beats any wig. I wear a prosthetic breast that is known to make an unexpected public appearance at any given time. I am a survivor.

Survivor Story - Brenda B.

Thanks for sharing your story, Brenda. What a coincidence that you and your mom were diagnosed just two weeks apart. When I was diagnosed, it was a bad feeling for me to realize that suddenly my mom, sister, and 3 daughters were thrust into the "high risk" category.

While I'm glad for you and your recovery, it's unfortunate that your mom is not doing well. I am sorry. My prayers are with you and your family.

Four years ago I was diagnosed with Breast Cancer, at the time, I was living in Ohio. Less than two weeks later, my mother, who was living in Florida, was also diagnosed with Breast Cancer. When I was through with my treatments and able to travel, I went to visit her. While I was there, her Oncologist did Genetic Testing on us. I wasn't genetic! She was hormone positive and I was hormone negative. I have had no further problems and am doing well. My mother however is a different story. We found out last year that her cancer has returned and is now in her lungs,chest wall, the lymph nodes in her chest, the fluid surrounding her lungs and bone marrow. She has been my strength my whole life....and now I have to be hers! Her prognosis is very grim but she tries to make the best of every day. We went through cancer together and we'll get through this together!

Brenda B

Survivor Story - Helen F., Age 47

Thanks for sharing your story, Helen. I can definitely relate to having a different outlook on life after having cancer. I, too, sometimes felt more positive about my situation than my family & friends!

I'm curious as to any treatment you may have had after your mastectomy and reconstruction.

Seven Weeks out of 47 Years

It’s that time again, the dreaded “PAP SMEAR”. It’s funny how these two little words sound so dreadful to you. “Hope you’ve made that appointment for your Smear Test, I don’t see what the problem is”, says your husband. You yourself know it won’t hurt, it’s just humiliating. You have no control over the situation, you’re asked to lie on the bed and then assume the position. Could it be any more humiliating?

During the next couple of days you ring the Doctors office to make the appointment. It’s ringing, I’ll hang on for a couple of rings more and if they don’t answer I’ll hang up and ring back another day. Damn it! The voice on the other end of the phone says, “Whoop Whoop Medical Clinic”. Now you have to make the appointment. Your making dinner that night and tell your husband with a slightly smug look on your face saying, “I’ve made the appointment for the Smear Test, I’ll be going straight from work on Wednesday night so I’ll be a little late getting home, Ok”. You receive a cuddle and a comment saying, “Good, I’m glad; it wasn’t that hard was it”.

The night before the appointment you’re lying in bed and you feel a lump in your right breast, just below the armpit. Yes, it’s definitely a lump so you mention it to your husband and you’re told, “Well, mention it to the Doctor at your appointment and get them to check it out; all very simple”.

The next day after work you make your way to the Doctors office. The Receptionist says, Good evening, yes we have you down for your smear test. You glare at her thinking, “not so loud we don’t need to tell everyone now do we”. You pray that you will be called next thinking that everyone is staring at you. Two people go in before you and then at last your Doctor shows his/her head and looks straight at you with a grin; you rise and follow him/her to the consulting room with a quick glance back to see who is watching you go for your Pap Smear.

You are in the Doctors office and you are looking at the ceiling then you hear the Doctor pull on the gloves, then the spotlight is turned on. You hear his/her voice and you know what comes next so you get into the position and think, hurry up and get it over with. The Doctor says, “Oh, sorry I’ve just got to get some Bla Bla Bla. Won’t be a moment. There you are left looking at the ceiling with a spotlight on your private and confidential area waiting to be invaded by the cold metal brigade. Eventually it’s over and your Doctor says, “that wasn’t too bad was it”. Your response being “of course not” when you really want to say “the hell it was”. You hear the Doctor say “well if that’s all, we’ll post the results to you in a couple of weeks”. You hesitate, your mouth opens to say something, your mind is racing, will I mention the lump or not, you see the face of your husband saying, “Did you mention about the lump in your breast”. The words spill out of your mouth and you are asked to lie down again and they will check it out. You know they have to find the lump but you did say where it was located but do they really need to push it through to your spine whilst checking. The other breast is checked as well and you are told that there is a thickening in the left breast near the nipple area and you’re told that because of your history you should have a mammogram and ultrasound just to be on the safe side. You’re told there is nothing to worry about. You leave the Doctors office thinking; thank God that’s over for at least another two years.

It was about three years ago when you found the other lumps. Benign Cysts they called them. Why do these breasts that you are so proud of give you so much trouble? In between morning tea and lunch at the office you make the appointment for the Mammogram and Ultrasound.

Life at this point will be a constant waiting game. Why these rooms are so cold I’ll never know! You would think someone would have the heating on high; after all, everyone who goes in that room is virtually naked and nervous. The radiographer is very pleasant and strives to make you feel at ease. Again you do the right thing and chat about the weather, your day at the office and other meaningless things whilst being manoeuvred around until your in front of and resting your problem breast on the cold machine. While still discussing meaningless things the operator throws in between the conversation the points about deep breaths, holding still, a bit of discomfort, no a lot of discomfort I’d call it. You think to yourself could they get my breasts any flatter. You take a quick glance down and there it is; what is supposed to be your breast but at the moment it looks more like a meat burger. I’ll never make another hamburger after this. Ten to Fifteen clicks later you’re finished with the mammogram. You are asked to return to the cubicle until the operator checks the film to make sure they got what the doctor wanted.

You’re now in the cubicle waiting for the ok to get dressed. You’re wearing a huge papery gown with just a paper belt to tie around yourself. You think to yourself if there was a fire and you had to go out into the street it would be another humiliating time with a paper gown on. You hear a noise but it’s not for you so you look at the wall in front of you and read things on it while you wait, have you checked if you’re pregnant before having your X-ray. This is in five different languages and then you hear a tap on your door, “sorry dear, I just have to take a few more shots, do you mind”. You say, “of course not” and grit your teeth thinking lets see how flat we can get your breasts this time. Salvation at last, you’re finished with the Mammogram. Now it’s time for the Ultrasound. Being covered in cold jell is not my idea of a good time and yet again, you must play the waiting game. This is when you realise that you have more crevasses in your breast than man found on the moon.

You get dressed again and are told that your results will be sent to your Doctor. Your appointment to see your doctor is for the following week. All of that week you worry yourself about that damned lump and the results of your tests. You should carry a warning sign around at work saying “mines in this vicinity, could explode at any sudden moves”.

When you arrive at the Doctors office you are amazed at the short wait this time, the doctor informs you that you need to go and see a specialist. You are again assured that there is nothing to worry about. You are given a referral letter which is sealed plus you’re X-rays and you blindly and ever so trustingly make your way out of the clinic in a bemused state.

I decided this time that I would look at my X-rays and read the referral before seeing the specialist. It reads, “Thank you for seeing this 47 year old female, you pause and think why Doctors have to be so clinical, after all I have been going to this particular clinic for years, they could at least use my name. I put the referral back in with the X-ray and throw them on to the back seat of the car.

You ring your doctor and advise that you have made the appointment with the specialist just outside the two weeks that was mentioned and I am immediately told that they will call me back. I receive a call from the Doctors office in less than half an hour and am told that I will be seeing the specialist before the end of this week. I now know that something is not quite right here and it could be serious. I tell my husband that night that I have to see the specialist again; it’s probably just another cyst that needs draining. That night I go out to my car and reach inside and pick up my X-rays again and decide to read the full report that was inside. There seems to be a problem area in the left breast that is of a suspicious nature which should be looked at more closely…………… I can’t believe what I have just read, “problem area” why can’t Doctors just tell you if there is a problem and let you deal with it then and there instead of letting you believe everything is ok after all it is your body.

I front up at the specialist rooms on the Thursday and I know there is something wrong and just wonder when he/she is going to fill me in on everything. I am asked to lie on the bed and am told that he/she intends to insert a needle into my right breast where I have the lump and he/she proceeds to insert the needle then the needle is twisted around a couple of times and then the same on the other breast. After applying a couple of bandaids on the insertion points, whilst getting dressed he/she says. “You do know about this problem with your breast and the outcome of the Mammogram and Ultrasound don’t you?” My answer to him/her is simply, “no, my GP said nothing at all; I was just informed to make an appointment to see you”. There is a sigh from the specialist and he/she tells me that there is a problem and says something about the left breast showing signs of thickening and the right breast having a small lump. He/she then asks me to make another appointment to come in again the next day with my husband or a close family member, we need to discuss the changes in your breasts more fully. I nodded my head and then everything was a blur from then on.

I made the appointment at the front desk before leaving the surgery. I drove home thinking how tough this was going to be telling my husband and family about the outcome as I did not want to upset them any more than is necessary. I cried a little on the way home and then told myself; nothing is final yet and dried my tears before getting out of the car in our driveway. I walked into the house and my husband asked how it went at the specialists. There was no nice way of saying it. I told him that the specialist wanted to see both of us tomorrow afternoon, my husband looked straight at me, and the hurt and frustration that I was feeling showed in his eyes. I gave a bit of a laugh and said, “Hey, its nothing to worry about, we don’t know what is going to be said to us yet” but I think we both new it was not going to be good news. We did not talk about it that night; it was easier to handle it that way.
The following day at work went quickly; I can’t tell you what I did, if I did anything at all. I left just before lunch after advising my boss of what was happening and his words were what you expect from everyone, “don’t worry everything will be fine”.

The conversation in the Doctors office started off with us being told that there was a cancerous growth in the left breast that had radically changed in size since my last Mammogram. They could not tell if the lump in my right breast was the same, as they could not get a good sample because of the location of this lump. We both sat there stunned. The specialist was telling us that he/she thought that a partial lumpectomy on both breast would be the best way to go as it is much easier on the patient than taking the whole breast. He/she believed that this would be a much better way to go in this particular case. The only thought that was running through my head was that I wanted to be rid of the two breasts right now and forget about conservation surgery, if they have cancer in them then I want them taken away. I wanted to be rid of the disease for good and not have to worry about it in the future. Meanwhile the specialist was going on and on about Breast Conservation. I reached over and took hold of my husband’s hand, he looked so upset and I knew that he was thinking about his mother who had died when she was 64 from secondary breast cancer. He would be thinking that it was happening again to someone he loved, his eyes were filled with tears and I could do nothing to stop the pain he was feeling. That is when I heard myself say out loud, “I would like to have both breasts removed”. Everything went silent, I heard my husband saying, “Maybe we should listen to the Doctor, the specialist leaned forward in his/her chair and said we could do another small test here today and get more samples of the breast tissue to make absolutely sure we know what we are up against. Silence again, I looked at my husband and he had a look of desperation in his eyes so I nodded my head and we followed the doctor into another room to do the tests. I was told that I would receive a local in each breast before proceeding with the test. I was shaking and the doctor was advising my husband and me what would be done. I was looking at my husband during all this and then I saw the needle they would be using. It was much larger than the previous needle and I began to panic, the nurse stepped towards me and told me just to take a breath in and squeeze her hand if I needed to. The needle was inserted and I felt a thud in my breast and then the needle was twisted in a circle a couple of times, the same procedure was done on the other breast and I was sitting there with tears running down my face and blood oozing from my breast where the needle had been inserted. I looked at my husband sitting on the chair near me and he looked utterly helpless, I gave him a reassuring smile that said, “its ok it doesn’t hurt that much.

After more discussion with the specialists about the breast conservation surgery I agreed that I would go through with it and it was all arranged for the following Tuesday with an admission time of 8.00am with surgery scheduled for 10.00am.

As it happened the breast conservation surgery was successful only on one breast and my husband and I were told by the specialist the following day after surgery that I would need to have the left breast removed as the cancer had spread to the outer limits of the breast tissue. This time I insisted that I wanted the two breasts removed and I did not change my mind. My specialist performed a Bilateral Mastectomy in 2002 and I followed up in 2003 with Breast Reconstruction.

The worst part of my journey with Cancer was not physical but emotional. My family and friends were placed on an emotional rollercoaster whereas I knew I would beat cancer but they were not as convinced as I was that I would be cured of Cancer. Family and friends mean the world to me,my work is not as important as it used to be. It is now 2008 and I am going strong but with a different outlook on life altogether.

Survivor Story - Sherry C.

You GO, Sherry! The reason I called this blog "Ya Only Live Once" is because, since having cancer, I try to live by those words. After I was diagnosed with a Stage IV recurrence in 2006, I vacationed to the Rocky Mountains (which I'd wanted to see for a long time,) thinking I better do the things I've always wanted to, and SOON! I finally started getting my photo albums in order (okay ... that endeavor was short-lived!) and I visited friends and family I hadn't seen in a long time. But a year or 2 into my very successful treatment, I started to realize that we, all of us, should ALWAYS live ilke this! Because I have cancer, I've been given a big reminder of my impending mortality. But the truth is, lives are taken in an instant in car crashes, heart attacks, you name it. You never know when your time will come. Or your loved ones'! So don't put off the things in life you've always wanted to do. Ya only live once! :)

In Feb, the Dr. called me to say the biopsy did not look good and that as soon as all the tests were complete, he would call me again. Two days later he called to say "Well, you DO have cancer" and then asked me to come seehim the next day after undergoing my first CT/Bone Scan. That was hard as the x-ray tech grilled me about why I was having it done. After about three attempts of saying it any which way other than using the C word, I finally blurted out, "I have CANCER." Me? I thought about it and soon came to the realization it was true. That afternoon, in a further whirlwind of the mind, I was in the Dr.s office. He first asked "why is there no one with you?" Well, I am single and miles away from any family. We both sat down on his sofa and he began drawing diagrams, listing statistics, and then in a seperate column laying down my personal data. A family history, repeated biopsys, and the type I had. By the end, it was decided a double mastectomy was best....next week!

The day came and very calmly I lay on a strectcher with friends coming in to pray with me, laugh with me, and wish me well. The Dr.'s last words before surgery was "I don't expect any surprises!" Well, that was short lived when he called me two days after I left the hospital. "I thought we had gotten it all, but we took out a few lymph nodes just to make sure. The results were...now he struggled for words....it has spread. You need chemo. Its stage 11B or [perhaps 111?) Well, luckily I am now 3 years out and so far "cancer free", but another developement came...I also have SLE. So I am still on a milder form of oral chemo and go in every six to eight weeks for an IV treatment.

Whatever, I celebrate each day I wake up, each time I have another clear CT/Bone Scan and every time I find another positive thing towards my future. Right after the chemo was done, I took a mini dinner cruise, a year later a hot air balloon ride, and now I am looking forward to a helicopter tour. Celebrate your life, no matter how big or how small a milestone maybe. Just because cancer may have challenged you, it doesn't mean you can't challenge yourself. Live to tell about your adventures, most of all do whatever you can to live, live, LIVE!(and of course love and laugh too).

Sherry C.

Surviving Daughter of Josephine S., 40-Year Fighter

Jo Ann,

Thanks for sharing your mom's story. Her oncologist was right: having cancer doesn't mean you've been given a death sentence. I am living proof of that!

Kim


I would like to tell the story of a wonderful and amazing woman, Josephine Strelzoff, my mother. My mother was born in 1921. She was diagnosed with breast cancer in 1967. The doctors told her it would only be a partial mysectomy when it ended up being a "full" mysectomy. In the process of being diagosed her and Frank Strelzoff were in the middle of adopting me, a 16 month old little girl. At this time my mother was 46. She was so afraid the adoption agency would find out she had cancer and deny them adopting me. They didn't.

In 1987, now at the age of 66 she was diagnosed again with breast cancer and had to have her other breast removed. She remained cancer free for about another 5 years when again she was diagnosed with colon cancer. She had the tumor removed and we thought all was well. As it turned out, her cancer returned now into her lymph nodes which spread to bones, mostly in her thoracic area. She started chemo therapy again but after a year of therapy she took herself off of it. She continued taking her "cancer free" pill, as I like to call it, but eventually in 2005 she was told the cancer had spread to her lungs to her vocal cords. On Dec 1, 2007 she ended up in the hospital due to a lower abdominal obstruction. They had to do emergency surgery on her, which she made it thru but due to the tube that they use during the surgery, it irritated her vocal cords worse and it became very difficult for her to breath. She was very tired of all the fighting she had done for the past 40 years and wanted to join my father in heaven. I have never met someone who put up such a fight.

Here she was diagnosed back in 1967 when the medicine we know today was nothing
back then. She passed away Dec 9, 2007, she was 86, but it wasn't because of the cancer. She taught me that no matter how old you are, you must fight to go on living. Her oncologist once said to me, just becuase someone might have "cancer" does no longer mean a "death sentence" I want to believe this and do believe this. I am 43 and all I can think of is my mom battled with breast cancer as long as I've been alive... My mom was a 40 year breast cancer survivor and this is her story. Rest in peace mom, I love you!

Your Daughter,
Jo Ann S.

Survivor Story, Clair J.O.

Thanks for sharing, Clair! Sadly, I've heard many stories of mis-diagnosis. My original weblog chronicles my journey through first thinking that my cancer was back, being told it wasn't, then discovering that it really was! It is so important that women stay on top of their own healthcare. So glad you mentioned the discharge to the physician's assistant.

Sorry to hear that you've had such a painful journey. But it's no coincidence that you are now being placed in people's paths who need advice or just to talk. God has a way of working these things out!


In June, I had a mammogram and was told that all was well. Four short months later in October when I visited my family doctor's office because of bronchitis, I mentioned to the (female) Physician's Assistant that I had noticed a nipple discharge. I probably would not have even mentioned it to my (male) doctor, but I thought maybe I had an infection or something minor. After all, I had gone through a recent mammogram and hadn't noticed any lumps.

I soon learned that no lumps did not mean no cancer, and a poorly read mammogram radically changed my life. My oncologist pointed out the cancer on the mammogram film--even my untrained eye could see it. Sadly, the trained eyes that had read the results four months earlier had missed it.That was eight years ago. Since the cancer was spread through the ducts, with no lump to singularly remove, I underwent a mastectomy and reconstruction. Then I developed painful internal scarring and fought with that for the next seven years--pain pills, steroid shots, nerve blockers, even Theragesic--all were futile attempts to deaden the pain.

My arm movement has been limited due to the capsular contracture, and as a college professor, I had to adapt my classroom teaching style since writing on the board was no longer feasible. I also had to learn to cover the pain since when it felt like a hot sword was piercing my right breast and I grimaced in class, concerned students would ask what was wrong. I couldn't very well tell them, "My boob hurts." Times may have changed but not that much!While I did not go through any radiation or chemotherapy, I endured pain. I underwent surgery again last month, and the doctor removed extensive scar tissue, so I'm on the mend again and now fighting an implant infection. I am determined that this time I will heal and not deal with constant pain for the rest of my life.

I have often wondered, why me? Then, as students noticed the pink ribbons and the links on our class websites where they could click to help provide mammograms, they made connections. One young man confided in me that his mother was battling breast cancer, and I provided him with some information that might help him cope, along with some connections that might help his mother. Then another student came in, crying. Her mother had just been diagnosed. The family wasn't happy with the doctor she was seeing, and I gave her the number for my doctor and the number for Hope Lodge. Still another student came in, only this time she was the one waiting on the results after a scary mammogram. I volunteer every year at the Komen Race for the Cure--nothing major, just handing out pink t- shirts to other survivors. We are a growing group, but I pray I see the day that breast cancer is eradicated and no longer a threat.Education takes place in many ways. While my principal role as an educator focuses on English and Literature in the college classroom, I have another side role--to pass on what I can when students are dealing with breast cancer in their families. For some, simply knowing that I went through it and beat it is enough to give them hope.

Clair J.O.

Saturday, June 13, 2009

Survivor Story - Linda K.

Way to go Linda. You're a hoot!

On June 25, it will be one year since I was told I had breast cancer. After putting off having a mamogram for three years, and survived a pap test that needed a biopsy, at the urging of my 24 year old daughter, I begrudgingly went for my mammo. When they came in after to tell me they needed to do another, I became uneasy. They said they found micro calcifications, which ususally amounted to nothing. They proceeded to set up an appointment for a biopsy. Telling me it is usually nothing. Well, after putting me on what appeared to be a torture device, with my breast falling through a hole and then clamped in place they said I would feel some tugging, now to me tugging was when my children were breast feeding. This was a lot more than that, but I made it through and was told that I needed to go see a surgeon. I did that and a biopsy was done. Still assuming that I had a clogged milk duct, like three years before.


I was totally shocked when on June 25,2008 my cell phone rang, it was my surgeon. He said "is this Linda", it's cancer any questions" Well, hello what a way to find out, and questions how could I have questions it was like I was in shock. Called my family doctor, who saw me right away and prescribed Xanax and therapy, he said I was in shock. Really!!! I had just quit smoking, but it seemed logical for some strange reason to start again. My family swarmed in within an hour with their wives,boyfriends and all the grandchildren. Got all the hugs, which then turned to having to tell my twelve year old son, who had just gotten awake and heard me crying that I had breast cancer. Thank God I have a sense of humor, because they all started watching me like I was going to pass away that very second. I heard more whispering at my house than I have at a library or church service.

I had to have a second surgery because the cancer wasn't all removed. So now with a partial mastectomy, I could use this as a lesson to daughters,step daughters, daughters- in-law, by making them look at my scars and what was lef! t of my breast. Meanwhile, I couldn't look at it, and went into a denial that it had happened to me. Now mind you I had a breast that looked like it had breastfed the entire world, and one that looked like someone took a huge bite out of it. How can you deny that. I did!!! Then after my radiation treatments and the wonderful Tamoxefen which caused instant menopause, came the hot flashes, night sweats and total lack of privacy. I was afraid that if someone would say let me see your breast I would automatically just open up and show them, it seemed like everyone was looking at my breast but me. I looked at it and it looks perky and like it didn't try to end world hunger.

I am 56 and do not want any surgery to fill in the area or raise the other one. I am me that same woman who had six children and have 11 grandchildren. After two bouts of lymphedema,a sleeve and glove to wear, which I must say are sooo attractive, lymphedema therapy and massage, I can now take care of my two year old grandson for ten hours a day, and every word he learns and every bird we see together in my yard is a blessing. I still find it difficult to call myself survivor, as it has not even been a year and I didn't need chemo like other women. I was lucky stage 1, and I am alive to see my son marry on May 23 of this year and hopefully will see his children being born when the time comes. I used to run up the steps and hear slap slap and wonder what it was, now I just hear slap and nothing, all this time it was my breasts, who would have known. I just had my mammo after my sixth month since radiation and was told that I am good until next year.

I have lived through rude comments from my husbands daughter, cried because of it, but I am stronger and more anxious to live than ever. The night sweats are fun, my husband is freezing with the air conditioning on all the time,ceiling fan and fan next to my head. My son can't quite figure out what is wrong with me when he has to turn on the fan towards me, then seconds later I am freezing an! d wrappe d in a blanket telling him to turn off the fan. It's kind of fun to watch the men when my face is beet red, sweat pouring off my face and neck and saying is it hot in here or is it me. I
am so thankful that my daughter insisted I have a mammo, because it would have been far worse if I had chosen not to go, just because it would cause a little discomfort for a few minutes, compared to a shortened lifespan. I live every day with so much happiness, I look at things differently now and with the help of support groups and my loving family I AM STRONG!!!!

Linda K.

Survivor Story - Janice D.,

Janice,
Thanks so much for sharing your story! You sure have been through so much. We would love to post your story on our weblog, and I'm sure it will inspire some fellow survivors.

My journey to breast cancer and survivorship. About ten years ago I fell ill and it took doctors three months to realize that I had toxic goiters on my thyroid. After radioactive iodine treatment I am taking medication for the rest of my life. Three years later I was diagnosed with sarcoidosis of the lungs and skin. After a five year regimen of prednisone in large doses my weight went from 140 lbs to 300 lbs. I developed diabetes, high blood pressure, osteoporosis, osteoarthritis, carpal tunnel, gall bladder problems, cushings disease and numerous other side effects. I was on a total of 23 pills a day. I endured open lung biopsy, right breast surgery to rule out breast cancer which was benign, gall bladder removal, arthroscopic surgery on my knee, carpal tunnel surgery, retinal detachment corrective surgery on both eyes, and during all this I was totally supported by my four grown children and very close friends. Since the right breast had been biopsied and microcalcifications were found, I remained diligent on yearly mammos and became the family advocate for breast cancer awareness. I tell you all this because this was just the beginning of my journey to the realization of how fragile life is. I was unable to work, lost everything I had and moved in with a friend who opened his home and helped care for me. As I began the road to recovery I developed fibromyalgia and suffered some set backs. I did my best to look after my aging parents and finally was able to relocate closer to them so I could care for them on a regular basis. I did this for five years.Last September 2008 I decided since I had lost some weight to partake in the breast cancer awareness 5K walk in my local area. I completed it in 55 mins. It was a major accomplishment for me to be able to do this and in support of something that was close to me having lost a grandmother to breast cancer in her early 40's. My dad passed away in April of 2008 and I moved in with my mother to care for her 24/7. Six months after my father's passing, (November 2008 )I was diagnosed with Stage I breast cancer in my left breast. My routine mammo was in September of 2008 and after repeated mammos, ultrasounds and breast MRI and finally breast biopsy, the result was cancer. I never felt a lump or anything that made me suspiscious. I was devasted and took two days to tell my children because I was unable to say the word "cancer". I had surgery on the 21st of November and began radiation treatments just days before Christmas. My four children were with me through the entire surgical procedure and supported me through the duration of my treatments and continue to support me today. I continued to care for my mother while going through my treatments every day and twice a day during the last week of treatments. I was tired and losing weight, but with the support of my children and friends I endured and finished my treatments the middle of February 2009. I am now taking oral medication for the next five years. Cancer made me rethink life and changed my life in many ways. I just participated in the Revlon 5K walk for women's cancer in NYC on May 2nd of this year with my daughters. I have begun a part time job working two days a week and appreciating everything life has to offer. I have had a long journey to breast cancer, and my journey I know is not over, but it has been a journey that has helped me become the person I am today. My story may not be unique, but it is a journey of ill health that I have traveled since I was 45 years old. I feel all the health issues I had prior to my breast cancer were conditioning agents to help me build strength to accept and deal with my cancer. My road has not been an easy one, but my breast cancer is the one that changed my life more than any other. I am thankful to be a survivor and will walk again in the local 5K walk for breast cancer this fall again, but this year I will be walking as a survivor. Thank you for letting me share my story.

Janice D.

Our 1st survivor story! Dana P., Age 41

Wow, that was fast! Our first survivor story has arrived ...

I was 41 when I was diagnosed with breast cancer in 2008. I underwent 6 months of chemotherapy, a mastectomy and removal of lymph nodes, 5 weeks of radiation and a full year of Herceptin IV treatments. Only a couple weeks ago I had my port removed which, to me, signified the end of the treatment chapter. My mission now is to maintain as healthy a lifestyle as I possibly can to do my part in fighting a recurrance. I have changed my diet by eliminating refined sugar, white flour and dairy and have switched to organics. I work on maintaining a calm state of mind through acupuncture and meditation. Although all I wanted was to go on with my old life and to walk away and leave the whole cancer experience behind me once treatments were finished, that was not to be. Just last month I opened a wig shop and mastectomy boutique that caters to women going through cancer treatment. It has already been a truly rewarding endeavor to have the priviledge of serving so many couragous women. As unwelcome as it was, cancer has truly enriched my life in ways I never dreamed possible.
Dana P

Send us your stories!

When I was first diagnosed with breast cancer in early 2000, after my initial, medical information-gathering stage, I found that reading about how other women coped with their illness and treatments was very helpful. My doctor gave me a locally-published book that was entitled The Many Faces of Breast Cancer (no longer in print.) It was a short book in which breast cancer survivors (my doctor's patients) talked about their ordeal in simple, girlfriend-to-girlfriend type language. It was awesome. I ate it up. I found the narratives and practical advice & tips coming straight from women who were going through the same things as I to be tremendously helpful and supportive.

So in the early days of pinkribbonshop.com, we carried the book in our product line and offered it at our cost. I thought it was that good. And necessary. Wanting to reach even more people with the same kind of information that I had found so helpful, we asked for breast cancer survivors and their friends, family, & caregivers to share their stories with us, and we would post the stories on our website's "Survivor Stories" page. It was slow going at first, but eventually the stories started flowing in. The response was overwhelming! We devoted an endless page on our website (see a pared-down version of the archived survivor stories here) to these amazing stories.

Because breast cancer is an equal opportunity illness and does not discriminate, women of all ages, races, backgrounds, and socio-economic status wrote in. Because breast cancer affects not only the patient, but also family and friends, we received stories from survivors' husbands, sisters, daughters, moms, and friends. Because breast cancer is still a killer, despite the millions of dollars being thrown at research around the globe, we heard from many people who had lost someone dear to them. Because breast cancer's face and course of treatment can take many different forms, our storytellers each had unique diagnosis, treatment, medical, surgical, and emotional components to their stories.

We were receiving several stories a day. People were even writing in wanting contact information on some of the writers, so that they could contact them directly and chat. It was great, but also a little overwhelming. The process by which we received them and then posted them on the website was time-consuming and, by today's standards, archaic. We simply couldn't keep up! Sadly, we realized we could no longer continue collecting and posting stories, while providing the level of personal service that our customers deserved.

Fast forward a couple of years, and here we are. I am hoping that this new blog can pick up where our old "Survivor Stories" page left off, but in a more interactive fashion. Yes, it's my blog, and it's called "Ya Only Live Once ... A Survivor's Journey." But I would love for it to become a place where survivors and others can go when they want to read and chat with people who have gone in their shoes. The journey of many survivors!

So please, email YOUR story to us at survivors@pinkribbonshop.com! We want to post them here, to help, support, and inspire others who are going through their cancer walk just as you have.

Monday, June 8, 2009

Summer is here!

I'm so relieved that school and the girls' dance recital is over! Whew, the end of the year is hard work for a mom! I know that by the end of the summer I will be ready for them to go back to school, but for now I am happy for them (and myself!) that homework and dance practice has ended. They get a few weeks to "just hang out" before they head to N.O. to visit with family for 3 weeks. Kids need down time too!

On the cancer front ... ummm ... well not yet ... I'll come back to that. I've kicked up my running schedule a bit to prepare for my 2nd year of half-marathon training which officially begins in July. Even though I told myself that I would keep running even after January's marathons, not having a goal to work toward made it easy for me to relax a little and hence, lose a LOT of the fitness I gained. I haven't gained weight, but the body has morphed back to mush, seemingly in a matter of just a few weeks! Taking the summer off from dance class (boohoo) to try to save some money during our lean months. Hopefully I can motivate myself to do other things that are "free," such as free weights, exercise shows on FitTV, etc.

Ok, on the cancer front ... my doctor has approved my request to have Danny administer my monthly Zolodex injection. Since my monthly infusion of Zometa has been changed to every 3 months, this will allow us to travel to MD Anderson only then instead of monthly. It's only about a 40-60 minute drive, but when you add in the lab work and all the waiting, each visit was an all-day affair. This new system will also save us THOUSANDS of dollars! My insurance policy has a lifetime maximum and you think, I'll surely never reach that. But then you start adding it all up and you realize that it could happen! Since it's looking like I might be around for a while, I guess I need to think about these things. What happens after you reach your insurance's lifetime maximum and you are ineligible for any other policy? I'll cross that bridge if/when I get to it.

Thanks for reading!