Women & Men Who Rock

Susan

Susan is one of those women who refused to let breast cancer keep her down. More importantly, she is so eager to give back to help the cause. She has been through so many battles as a result of breast cancer, but the determination, the love and care she has for her family and others is what struck me about Susan the most.

On April 27th, 2011, I felt a pop in my right breast that would forever change my life. It popped while my husband and I were being intimate. It was very painful. But, I put the pain aside and went on with my life. I was in my junior year of my BSW program at the University of Louisville. I was 34 years old. The next day I had a final. I really wasn’t focused on calling the doctor even though my breast was hurting. My husband kept hounding me until I finally called and made an appointment.

I went to my Gynecologist on May 3rd and she made an appointment for the very next day to get a mammogram and ultrasound. So I went to that appointment and while I was getting the ultrasound, the radiologist said, “You need to see a breast surgeon.” Wow! I just knew I had cancer.

I had an appointment on June 3rd with the breast surgeon. Within those three weeks, my lump had grown to the size of a grapefruit. At first, the surgeon said the mammogram looks like a calcium deposit. I told her to please just look at my boob! When she looked, her face turned pale. I had a biopsy right then and there. I had a tumor over 8 cm and it had spread to my lymph nodes.

On June 7, 2011, I had confirmation: “Susan, you have breast cancer. You are stage 3B and it is aggressive.” Oh my God! What am I going to do? Am I going to die?

My husband and I went home and I cried the whole time. We told our boys who were 11 and 9 at the time. Then we told everyone else. It’s kind of sad how people just drop out of your life so quickly when you tell them you have cancer. Really? Like it’s contagious? But then I just thought that maybe they don’t want to see me sick. But it’s stressful when you don’t have anyone to talk to.

So here was my schedule:

June 10th I had scans all day

June 13th I seen the Oncologist

June 15th I had port placement surgery

June 16th I had my first chemo then went and got my hair cut short!

I had chemo every 3 weeks. I was on antibiotics and steroids every 3 weeks, low immune system, fatigue, but I never got sick! My hair started falling out after the first chemo so my husband shaved my head for me. That was so hard for him to do. He did such a good job holding in his tears! At least I got pretty scarves to wear! I bought two wigs but dang they were hot!

In July of 2011, we joined our local Gilda’s Club. I met some amazing friends who have become my close pink sisters! My family and I have had the opportunity to do things to help ease the pain of having cancer. Gilda’s Club has been awesome to our boys. They have gone places and had all night camps!

My last chemo was Nov 9th and my husband surprised me with pink flowers and balloons! The nurses gave me a medal of completing chemo.

Nov 14th, 2011 MRI showed tumor had shrunk but not completely gone.

Jan 11, 2012, had a bilateral mastectomy and expanders put in. The surgery lasted 8 hours and she had to take a lot of tissue and more skin than she wanted to just to get clear margins.

March 29th I started radiation every day until May 2nd. That was rough. My skin burned and peeled and I was very tired. I slept a lot during radiation.

August 10th, 2012 had implants put in. In September, I fell down our basement steps. My husband found me unconscious and called 911. I remember waking up thinking I was 18. Oh my gosh! I didn’t know my husband or my kids or anyone. It was very hard for all of us. But we made it through that and after a while, I finally remembered everyone!

July 2013 I got an infection two weeks after I went on a cruise with my husband. It was so bad I almost died. I had to get my right implant removed and even more skin removed. I was in the hospital for 8 days and went home with a pic line so I could give myself antibiotics.

April 21st, 2014 I had my ovaries taken out. I have been in menopause since 2011. I am taking Tamoxifen and have crazy hot flashes! I have lots of headaches.

So I had an MRI a few weeks ago and they said I had a brain aneurysm. So they did an MRI, and no aneurysm! Yah! But there is a spot on my brain that they don’t know what it is, so a follow-up MRI will be done. Maybe a PET scan will be done instead! My body is so messed up because of cancer, chemo, radiation and all the infections and surgeries. I still do physical therapy every week. I have to wear a sleeve on my arm so I don’t get lymphedema.

I will just be happy not be so tired!

I just want to say thank you to my husband, my boys, and the ones who have been there for me. I love you guys! I want to say thank you to all my PINK SISTERS! I love you all!

Please here to donate to Susan’s cause: Gilda’s Club Louisville.

Stephanie & Jenny

Going through the process of talking to people who have or had friends with breast cancer, this is one of the stories that moved me the most. Not only was the story of Stephanie Harrison’s life poignant, but her friend Jennifer utterly fascinated me. Jennifer’s attitude towards her friend’s trials and her own battle with Muscular Dystrophy left me both floored and inspired. I can only wish that if I ever had to face any difficulty of that magnitude in my life that I do it with the grace and class that these two amazing women did.

This is my friend, Stephanie Harrison’s story as I saw it!

Stephanie was a hard working single mom of a sweet 10-year-old boy. She was independent and loved her job at Hobby Lobby.

She was doing her routine self-breast exam and found a lump. She went to the doctor, did the routine tests and as they suspected she had cancer. She then decided to go to MD Anderson to get the best treatment. She had to LIVE! She did about 2 years of treatment. Still working while going back and forth from Lafayette, Louisiana to Houston, Texas, Steph continued being supermom (in my opinion).

Money was always an issue with medical bills piling up constantly. Her family and friends decided to do a benefit to help her with those costs. We raised $7,000 and she was ecstatic! It wasn’t much in the grand scheme of things but every little bit helped.

She bought a pink wig to wear because she was so silly but she hated it. She felt like she needed to show off her bald head to show others that this was nothing to be ashamed of. After she was almost done with Chemo, she had a mastectomy and did weeks of radiation. I can’t even fathom having to deal with all the obstacles she dealt with! Months later, Steph is CANCER FREE! She never thought she would get to ring that bell at MDA but it happened!

It wasn’t but a few weeks later that Steph couldn’t breathe. She went to the hospital and they said her lungs were burnt from the radiation and was filling up with fluid. This happened several times in the next few months, causing her to stay in the hospital for several days at a time getting the fluid drained from her lungs. She knew something was wrong. She went back to MDA and sure enough, the cancer was BACK!

This time in her lungs and it was back with a vengeance! They gave her a death sentence with NO hope! Told her that there’s nothing they could do, so prepare! This was devastating news! My friend who was only a year old was dying! She did several months of two experimental drugs but they weren’t helping much! It had now spread to her Lymph Nodes.

At this point, she had no hope! She went into the hospital in January and I knew if I wanted to see her and tell her bye this was my only chance. I drove an hour and a half to the hospital and held her hand to tell her how proud I was of her! How much of an inspiration she was to so many and that she did an awesome job with her son! I told her it’s ok to let go! No one will be mad at her!

I was leaving out and she opened her eyes and said my name!

“Jenny!”

OMG heartbroken!

Under the mask of oxygen, she said these words, “I love you and you are an inspiration to ME! You have Muscular Dystrophy and never let it stop you from being a great mom and friend! I knew I had to fight this cancer because you have fought MD for 20 years now! Thank you for being an amazing friend!”

I kissed her and left after I told her I loved her. That was a Friday. Stephanie lost her battle early Sunday morning, one week before her 39th birthday! It’s always so hard losing someone you love and so young! Her funeral came and went. Three months later, her sister surprisingly popped up pregnant. It was unexpected! She looked up in the sky and said, “Thank you Sissy!”

Thank you for listening to Steph’s story!

Please here to donate to Stephanie and Jennifer’s cause: MD Anderson and/or Muscular Dystrophy Association.

Deborah

Meet Deborah, a woman who does not like being called a hero and who according to her, and I quote “I don’t think that I am special”. I had a sickness and dealt with it.” You decide. At the very least she’s a fighter and refused to give up – TWICE she kicked breast cancer right in the ass. Read her amazing story of perseverance below.

Hi Everyone,

My name is Deborah Favorito, I am a two-time survivor of Breast Cancer.

This is my story.

I am now divorced, I have three children, a son 33, a daughter 32 and another daughter who is 29. When I went through cancer the first time I was married, the second time I was divorced and living alone.

My mother was diagnosed with breast cancer in 1985, she had a mastectomy.

Her cancer was found by a very astute intern. The intern had been taught that just feeling for lumps wasn’t enough, feel the skin also. My mother’s breast felt like the skin on an orange. Her tumor was so small that in order to biopsy it, she was sent to another hospital so that she could have a needle put into where the lump was. She was diagnosed and had her surgery at a veteran’s hospital.

Because of my mother, starting at age 35 I had a mammogram yearly. If a spot was found, I had it biopsied. I did not neglect self-exams; I was very anal about it.

In November of 2004, I had a mammogram; everything was fine. I was 54 at the time. In late 2004, I noticed a change in one of my nipples, mine are flat, this one was starting to become inverted. I spoke to one of my sisters about it; she said that hers was like that and not to worry.

In January of 2005, I was reading a magazine; it said that one of the signs of breast cancer was inverted nipples.

I will admit that I didn’t go to the doctor right away. About two weeks later, I went to my GP, who sent me to have an ultra-sound. The ultra-sound showed the lump, I then went to an oncologist. By this time it was April, I had the biopsy done. The person who did the biopsy said he was 95% positive that it was breast cancer. I met with the surgeon who was doing the surgery.

I wanted a total mastectomy, my surgeon wanted to save the breast, I had the lumpectomy done, she did have to remove the nipple, it was also in my sentinel lymph node. I had 15 removed. I went back to work one week after that surgery.

I was at stage two in less than two months. My cancer was estrogen-fed. I was taking hormone pills while I was going through the change. I took them for three years.

She called me two weeks later to say that they hadn’t gotten a clean margin. The part that they did remove had nine different areas that had small cancer cells. So I had the second surgery, still not a mastectomy, two weeks later I had the third had final surgery. When she had gone in the second time, they found six more areas that had cancer cells.

The day after that surgery, I went to Foxwoods with my sisters. By then I knew what to expect after the surgery. My then husband left for Italy the same day, which did not bother me at all, I told him to go.

I was accepted into a study for breast cancer, I was given the highest dose possible. I had chemo every two weeks for 3 months. The day after chemo I had to go back to get a Procrit shot. The shot was to pull the white cells from the bone. I worked for the first two months of going through chemo.

I was a short order cook, one morning I went to make someone eggs and lost it, I was able to take a leave.

The treatments were not easy. I lost my hair and I had no energy. I would have my treatment on Wednesday. A week later is when I would get sick. I had very expensive pills ($100.00 each) to take the day before, the day of and the day after for the sickness. I lost all taste for food. I lived on egg drop soup, (my local Chinese restaurant would make enough for 4 days for me) tomato soup and lemonade Coolatas from Dunkin Donuts. The manager, a friend, would bring me one in the afternoon.

I was sleeping on my couch; the only bathroom was on the first floor. I wasn’t sleeping, I was on pain pills from the Procrit. One night I was laying there in great pain, tired, I just wanted to die. Up until that night, I had been fine. I guess that I just wanted to give up. I didn’t, I had my three children to live for. That night was the lowest I had been during this whole time.

I would go to treatments happy, smiling, as I told my youngest daughter; I was too much of a bitch to die. During chemo I read the book, “Do They Wear High Heels in Heaven”, it was about someone dying of breast cancer. I thought it was funny, my sisters didn’t. When I lost my hair one of my friends who had had breast cancer said your hair will grow back thicker and curly. It didn’t, it grew back thinner. I have no hair on my arms, my legs I only have to shave every three or four months. The hair on your body facilitates sweating, to help keep you cool.

After my last chemo treatment, I went on a pill called Arimidex. It killed all the estrogen in my body. Major hot flashes. I stayed on those pills for five years. I stopped taking them in 2010. My five-year anniversary of stopping chemo.

In March of 2013, I noticed a lump on the same breast. When I had the mastectomy, the surgeon left enough tissue and muscle in case I wanted reconstruction. That is where the lump was. My primary sent me to an oncologist; things got screwed up because each thought the other had made the appointment for the biopsy. I wanted it removed, I didn’t care if it was just a pimple, I wanted that sucker removed. In June I had it removed, the cancer had returned. I went through six weeks of radiation. The strongest dose possibly because of the return of the cancer. I now have a nice tan. It has faded, but not gone completely. I was put back on the Arimidex for the rest of my life.

My chest and muscles are sore and will be for a very long time. Because of my age, my daughters don’t have to have DNA testing done. They do self-exams and will start mammograms when they are 35.

Battling breast cancer is no picnic but it isn’t a death sentence either. You do what you have to in order to survive. I am no hero, I am a human being who had an illness.

Truthfully, I hate pink. Before you contribute to a cause for breast cancer, check how much goes to actually research and to help people who have cancer and can’t afford treatments. The American Cancer Society does not give individuals money to help them with medical bills.

My total cost for my first round of cancer was close to $500,000 dollars. My insurance paid 99.99% of it. I only had to pay co-pays. A lot of people can’t afford the cost of fighting any illness. I know that companies need money to find a cure for any cancer. But, there are so many different types of cancer that I don’t know if there will ever be a cure. Better drugs to fight it, but not a cure.

Chi

I contacted many organizations online hoping to get 31 people to feature in this project. Out of all, Chien-Chi was the only one to respond. I am especially happy that she did, because I wanted diversity in the people that I featured. Reading her story makes us realize how race, gender and sometimes cultural background can affect women and men living with the disease. I applaud you Chien-Chi for being a pioneer in your community.

Engaging the Community in Recovery

In a recent email, Chien-Chi Huang writes, “Looking back, the most frightful thing that happened during my cancer journey was not losing my hair, my breast or [potentially] my life- it was losing my mind!”

Over two phone interviews, Chien-Chi Huang gave a stoical description of her cancer journey through paranoia and depression into wellness. She explained she experienced paranoia and delirium, rare side-effects of the steroid Prednisone, during her cancer treatment. [While living with her in-laws], she interpreted her in-laws’ refusal to accept meals and carpool offers from neighbors and friends as their way of intentionally isolating her from the outside world because they were ashamed of her. At one point, Chien-Chi even lost trust in her husband and threatened to remove him as the Health Care Proxy.

On her later depression, she adds, “I think my depression was partly caused by the isolation and also the toxic chemo drug lingering in my body after the treatment.”

Since Chien-Chi could not find the support she was looking for, she started the Asian Breast Cancer Project. “I wanted someone from my culture, my background, who spoke the same language,” Chien-Chi explained. She gave an example from the Asian Breast Cancer support group: “We were talking about diet and someone mentioned the food Mother made you when you were sick. Everybody’s eyes lit up.”

Chien-Chi’s climb back to feeling better began with the example of others. She said she had a revelation in a support group she was in, in which a husband and wife both had cancer. Their example of a fighting spirit inspired her to stop focusing on herself and to see how she could help other people. She chose to start in Asian-American women’s communities, to help bridge the gap between Asian and American concepts of health and wellness.

“Asian people don’t separate mental health from physical health,” explained Chien-Chi.

“They think they are ‘out of balance’ and need to restore harmony of their mind and body.” Chien-Chi feels that American mental health treatment providers need information about Asian health culture and the role of the individual within the family. The collective good of the family is considered more important than the needs of the individual. Chien-Chi explained that sometimes health providers will encourage people to get well for the benefit of their family, in case they do not consider their own benefit a good enough reason to follow treatment. She went on to say that cancer is stigmatized in Asian Communities. “Some people still think it’s bad luck to be around a person with cancer,” she explained, “or that they got the cancer because they did something wrong.” In addition, “Asian people are taught not to talk about suffering-women especially.” If the suffering is due to mental health causes, stigma may prevent the Asian man or woman from talking about it directly. “Instead he or she may talk about having a headache or being unable to sleep.”

Chien-Chi said there is a high rate of suicide among young Asian women and that Asian women have a high rate of depression. Second Generation Asian-Americans may struggle with issues of identity that First Generation Asians do not have, or have in a different way. “It’s important to respect the culture of the person who is being treated,” added Chien-Chi. “Ask what is the problem, what do they think the problem is. Include them, negotiate with them.” Working with the person also includes selecting an interpreter carefully. A young woman would not be ideally chosen to interpret for an older man, and it is not desirable for a family member to do the translating, e.g., a son translating for his mother about issues with her reproductive system.

In addition to the Asian Breast Cancer Project, Chien-Chi is presently the Executive Director of Asian Women for Health.

Chien-Chi has received multiple community awards for advocacy for Asian American health care, and has had numerous speaking engagements on Asian culture and mental health. Chien-Chi Huang has turned a devastating experience with cancer and depression into an opportunity to create resources for Asian-American women in Massachusetts. Indeed, she herself has become a resource for Massachusetts service providers wanting to understand more about health care for persons of Asian-American cultures.

Please click here to donate to Chien-Chi’s cause: Asian Women for Health.

Lisa

When I first spoke to Lisa, one of the first things I remember her telling me was that her story would be boring. But she was wrong. One of the other things that she also told me was that she found out she had breast cancer and she didn’t even have a lump. I didn’t even know that was possible.

We all have something important to share. And we never know how our stories might impact, help and educate others. Thank you Lisa for sharing that, because of you, I went and educated myself a little more, I’m sure many others will learn from your story as well. YOU Rock! Thank you for sharing.

THREE SMALL WORDS by Lisa Misak

Three small words changed my life. No, they weren’t “I love you.” Those three small words were “You have cancer.”

In 2011, I joined some co-workers in an American Cancer Society Relay for Life team. My dad passed away from lymphoma in 1996 and thought it was a good cause. In February of 2012, while our team stuff was doing a bake sale I went for my annual mammogram. Actually, I was thinking about skipping it, putting it off because I was kind of busy and, let’s face it, it can be annoying, but I figured I might as well just get it over with.

A couple of days later, the hospital called me and said they’d like to do another mammogram. They said they saw something “abnormal” and just wanted to be sure. I was a bit nervous but thought it’s better to be safe than sorry, so I went. Besides, breast cancer doesn’t run in my family, so why worry.

The radiologist said she saw something but wasn’t quite sure what it was because it was so small, but recommended doing a biopsy. So, I met with a breast surgeon and had the biopsy done, and he said he should have the results back in a few days. By now, I was starting to get nervous, so when it was time to call him back I came home from work early and asked my husband to do the same, and then I called the surgeon. That’s when I heard those three small words. “You have cancer.”

I did a lot of crying. And wondering. Was I going to die? Did I have to have radiation? Chemotherapy? Were they going to cut my breast off? Would my husband still love me? After all, our vows did say “for better or worse” but they don’t mention cancer, which is pretty “worse”.

We immediately went into the doctor’s office. He told us there was no lump; the cancer was in small calcifications, and the only way to detect it was by a mammogram. He recommended a lumpectomy, where they remove a small portion of the breast tissue and hope to get all of the cancer out of the body and follow up with radiation treatments. Well, it didn’t work. I was told they didn’t have a clear enough margin of cancer-free area. So he did a second lumpectomy, with the same results. At this point, he recommended a complete mastectomy, but also recommended I get a second opinion.

I did more crying and more wondering. Was this really the plan for my life? I didn’t want to lose my breast, so I went for that second opinion. I told the doctor I didn’t want to lose my breast. The cancer-free margin they were looking for wasn’t there, but it was close. Couldn’t I just get the radiation and go from there? After some consultation, she agreed. However, she warned me of the possible effects of the radiation on my breast: burning, scarring, change of texture, not to mention being misshapen from the surgeries.

I asked my husband, “Are you going to leave me?” He asked why. And I told him that I was worried because this was going to be a long process, and I thought he’d think I was ugly because of all that. He just held me and said, “I love you. I’m not going anywhere. And don’t ever turn away or hide from me. I will never think you’re ugly because of this.”

A little while after we walked in the 2012 Relay for Life, I began my seven-plus weeks of radiation treatments. After a couple of weeks, I felt what they referred to as “radiation fatigue.” I had enough energy to go to my treatments and come home. Through the American Cancer Society, they arranged for volunteers to drive me to my treatments and home again. And that was about all the energy I had. After that, I was either lying on the couch or in bed.

A couple of days after my birthday I had my last radiation treatment. The radiation oncologist said, “You are now cancer-free. That’s what the radiation does: it kills cancer cells. So live your life like you are cancer-free.” I still had to take medication for five years and get a mammogram every six months to verify the cancer hadn’t returned, but as for right now, I was cancer-free! Woo-hoo!

Almost two years later, I am still cancer free. I still get apprehensive when that six-month check-up rolls around. In fact, I had a slight scare this past February when they saw something on my mammogram, but a biopsy proved it to be nothing more than scar tissue from the lumpectomies. I am cancer-free and very blessed.

As you may imagine, this has changed my life in many ways. And I have learned much, as well, and I’d like to share some of that with you.

Get a mammogram every year. Most women who get breast cancer do not have a family history of it (like me). And sometimes it can be detected before it even becomes a noticeable lump (also, like me).

Allow yourself to be angry at the diagnosis. Let yourself cry. And then forgive yourself for being angry and emotional. It’s real and it’s a part of life.

Use the American Cancer Society – they are a great resource.

Ask for help from family and friends. Many of my friends were extremely supportive and encouraging, and I especially thank my husband, who was and is a wonderful caregiver and remains my best friend.

Keep a sense of humor. Be silly! Be goofy! And laugh!

Join a support group, or talk to someone who has been through this. They will understand, and you will know that you are not alone.

And most important, cancer is not a death sentence. Never give up hope. Never stop living life!

Please click here to donate to Lisa’s cause: PA Breast Cancer Coalition.

Nicole

On this journey, many women I approached did not want to talk about their battle with breast cancer, and I completely understand that, it is a very personal and difficult topic for many. But Nicole was different, she was eager to share, she wanted others to learn from her experience. This is her story.

In December of 2012, I noticed a large and somewhat painful lump in my left breast. It was pretty large, about the size of an egg and came up suddenly.

I had no family history of cancer and am fairly young so my doctor felt it was a cyst and told me it would go away on its own.

I had a nagging feeling that it was more than a cyst and told the doctor I wanted more tests. He was hesitant about further tests, trying to reassure me that it was nothing, but I demanded the tests.

Thank God I did, because a week later I had an ultrasound, a mammogram, and then a biopsy that confirmed my worst fears. I was diagnosed with Stage III Breast Cancer.

I had a high-grade, aggressive, tumor that had spread to the lymph nodes under my left arm and also into my inner-mammary nodes in the chest wall.

To say I was scared would be an understatement. I was terrified. I was a single mother with two little boys and all I kept thinking is what will happen to them if I die?

I was fortunate to have a terrific medical team as well as incredibly supportive family and friends because those first few months were an emotional roller coaster for me, and I couldn’t have gotten through it without them.

In a matter of days, my doctor had me begin an aggressive chemo regimen, which was followed by a bilateral mastectomy, another 12 rounds of chemo, 30 rounds of radiation, and a year of targeted therapy.

It was a tough year that left me emotionally and physically scarred. But it was all worth it because my most recent scans have shown NED (no evidence of disease). My remission is largely due to a new targeted therapy called Herceptin.

This is what I call the miracle drug for those of us that have HERS2+ breast cancer, a rare type of cancer that is very aggressive and used to have very low survival rates. But thanks to research and this new drug, the outcomes are so much more positive.

It took me a year and a half to process everything I went through and once I did, I felt I was ready for the last phase, reconstruction.

There are many options for women when it comes to breast reconstruction, but because of the extensive burns I had from radiation, my options were small. The only surgery that I was a candidate for is DIEP Flap Reconstruction.

There are only a few doctors in the US that can perform this and I was fortunate enough to find one in my city. He did an amazing job and was able to fix what the cancer took away from me, something I will be eternally grateful for.

Today, I am still in remission, my boys are well-adjusted and happy, and I have found love and remarried. The cancer taught me a lot and there are many things I want to pass on to others:

Cancer is NOT an automatic death sentence.

Always trust your instinct and don’t let a Dr. convince you to ignore something if you feel otherwise.

Funding for research does help and does lead to miracle drugs such as Herceptin that saves lives.

You are stronger than you think and CAN get through a cancer diagnosis.

Cling on to family and friends for support.

Have faith.

~Nicole Jones

Please click here to donate to Nichole’s cause: The Caring Place

Mary

I never had the pleasure of meeting Mary Theresa, but Retta her granddaughter shares the amazing story of her battle with different forms of cancer below.

I’m not sure about dates but, my gram, Mary Theresa was my rock, her strength and determination are my inspiration. She battled five different types of cancer, ovarian, uterine, breast, skin, and a cancerous tumor in her back.

By the time she was 34 years old, she had already battled and won against ovarian, uterine, breast cancer. She had to have a full hysterectomy and a double mastectomy but she won the battle!

It was years later that she found out she had a small patch of skin cancer, had it removed only to have it again 10 years after that, again it was removed and never returned!

The cancerous tumor wasn’t found until after she passed away and we had an autopsy done, my gram was 86 when she died but she was my warrior! Cancer SUCKS but I’m happy to say my gram fought and won against it!

Please click here to support Mary Theresa’s cause: Susan G. Komen