A Daughter’s Perspective: Amanda Thompson

Today’s guest post comes from Amanda Thompson and breaks form from the others this month as its author has never been diagnosed with breast cancer. I thought it was important to feature a story from a daughter’s perspective. Amanda’s mom was diagnosed with breast cancer nearly fourteen years ago. A heartfelt read.

amanda-thompson

Amanda and I first connected on Twitter about a year ago after I had been tweeting about the breast cancer storyline on Parenthood. Amanda said she could relate to Haddie’s storyline. If you’re a fan of the show, you might remember that Kristina and Adam waited to tell their daughter about Kristina’s diagnosis so not to disrupt her studies at college. Anyway, long story short…Amanda’s parents also waited to tell her about her mother’s diagnosis.

Tell us how old you were when your mom was diagnosed? 

I was 22 when my mom was diagnosed. She was 58 years old.

What was your reaction?

I can remember being really scared and thinking immediately that it was a terminal diagnosis. I was really uneducated about breast cancer and I thought I was going to lose my mom. I was young and didn’t realize cancer is something you could survive.

Tell us about how your parents waited in telling you about the diagnosis.

It wasn’t kept from me, however my parents did delay telling me.  I was on spring break when they found out, they waited until I got back and I feel it was downplayed.  I related to Haddie because just like her I made a surprise visit to my mom in the hospital when she went through her double masectomy.  I did not tell my family I was coming because I feared that they would tell me not to.

Have you been tested for the BRCA gene mutation?

No. The doctors really feel that my mom’s cancer was caused by hormone replacement drugs she was on for ten years.

Has your mom’s experience with breast cancer taught you anything?

My mom’s diagnosis taught me that cancer can be beat.  She is a survivor, still living cancer free since 1999. I am also no longer afraid of cancer.  I have read a lot about cancer and have also decided that you can drive yourself crazy worrying about all of the things that may or may not cause cancer. Therefore I believe in early detection versus prevention because I refuse to live in fear. I think it is very possible that I will have a cancer diagnosis sometime in the future and plan to fight like a girl if and when that happens. I am constantly inspired by survivor stories of many that have already gone through this.

10.30 Refuse Fear

Amanda wanted to share this poem she wrote shortly after her mom’s diagnosis. I think it’s a lovely way to wrap up this month’s breast cancer series.

The Hug

When I arrived home from spring break and heard your news,
The only thing I wanted to do was go home and hug you.

Three hours away, why’d you have to be so far?
But I decided you were worth it and got in my car.

On my way there I started to cry.
Thinking of the pain you’d go through and the chance that you’d die.

I quickly erased that thought out of my head,
And began to think happy thoughts instead.

I remembered all the times you were there for me,
When I needed a kiss because I’d skinned my knee.

I knew then everything would be OK,
And I will be there for you in every way.

But for now we just have to wait,
And see what will happen, leave it to fate.

God’s on our side, you wait and see,
Believe in him, he believes in you and our family.

As I pulled up into the drive,
I wondered if you were waiting for me to arrive.

I ran in the house and into your room,
Expecting to see a face full of gloom.

Instead you gave me a smile and a warm embrace,
And a huge smile grew across my face.

That hug told me you would be all right.
Will I worry again? Well, I might.

Living Beyond Obstacles: Andrea Nugent

After a delayed breast cancer diagnosis, Andrea has a new zest for life. She’s written two books and is a respected public speaker and advocate for early detection. Read and share.

andrea-nugent

Tell us about your diagnosis.

I was diagnosed July 2009 with stage III breast cancer and again in November 2012 with stage IV metastatic breast cancer to the liver. Unfortunately, my initial diagnosis was a delayed, nine months after doing my mammogram.

Delayed? How so?

I went to do a routine mammogram in late 2008. I felt pain in my right side, to the point where I could not sleep on that side at night. I remember everyone telling me you have nothing to worry about. I never received a report from the doctor after the mammogram and the pain subsided. In the Spring of 2009, I went to the doctor for an ear infection and asked about the mammography results. I was told “Oh yeah the doctor needs to see you right away.” By this time it had spread to the lymph nodes, there were small spots on the lungs and spots of the ovaries.

What was your reaction?

My first emotion was guilt. My life did not flash before my eyes, it was my son’s life that flashed before my eyes. He was two years old and I felt somehow I was letting him down by getting cancer. I thought I was going to leave him motherless and I felt guilty.

I can 100% completely relate to those emotions, also a new mom, I was overwhelmed with guilt of potentially leaving my child motherless. Hugs. Talk to me about your treatment for stage III breast cancer. 

I underwent 18 rounds of chemotherapy, bi-lateral mastectomy with 9 1/2 hours of reconstructive surgery and 5 1/2 weeks of daily radiation followed by Tamoxifen. After 1 1/2 years on the Tamoxifen I was re-diagnosed in November 2012 with stage IV breast cancer with metastasis to the liver. I underwent chemotherapy again and was told this time I would be on chemo for life followed by palliative care and hospice. As of April 2013 and after just 5 rounds of chemo, I am in full remission once again.

How has having breast cancer affected your everyday well-being?

I tried to freeze my eggs prior to starting chemo, however, it was unsuccessful. Chemo has put me into early menopause. I gained over 40 pounds with the steroids during chemo. Mobility is challenging some days with lymphedema and neuropathy.

What are you doing now to write your new story?

Sometimes things happen to us that we just don’t understand. These things sometimes become the doors and windows to our destiny. Cancer is by far one of the worst things that could have happened to me. However, it caused me to truly change my life and reconsider the things that are truly important to me. My life has come full circle to where I am now serving others through my non-profit. B.i.o.n.i.c. Girls, Inc. (Beauty is Optional: Newer, Improved, Changed) I have a new zest for life and I am pursuing all my passions such as public speaking, encouraging and motivating others. I have authored two books (ebook “The Road to Prosperity: Let Your Passion Lead the Way”) and (children’s book “Mommy is Still Mommy: Cancer Can’t Change That!”)

10.29 Sometimes Destiny

Some days I am limited by the after effects of chemo such as lymphedema, fibromyalgia and neuropathy, however I accept the reality and not the limitations. I let nothing stop me and my motto is living beyond obstacles.

You can read more from Andrea and purchase both of her books at her website AndreaNugent.com 

Redefining Normal: Lisa Howard

Lisa Howard thought she had life figured out but a HER2+ breast cancer diagnosis pushed Lisa to explore uncharted waters and redefine her normal. Read and share.

Lisa Howard Aug 2013
Tell us about your diagnosis.

Cancer made a surprise attack by not showing itself until it had reached Stage 3 status. A clean mammogram (8 months prior) and (mostly) monthly self exams didn’t work in my favor. I’m one of those people who always seem to go against the norm. I discovered a very large, what turned out to be 10 cm, mass one night as I was preparing for bed.

10 cm is no joke. What was your reaction?

Being a divorced woman hoping to find new love one day, my diagnosis took me down the vanity trail. Hair loss and potential weight gain were the only things that initially consumed my thoughts.. Strange, but true. It was far easier to focus on the superficial than to deal with the tough stuff. However, it didn’t take long for me to shift into business mode and begin formulating a plan of how I would fight this battle mentally. I wasn’t given many options with regard to treatment so I kept my focus on maintaining a positive attitude and researching lifestyle changes that would help win the war.

You mentioned limited treatment options, what were they?

I began with 24 weeks of chemotherapy, 12 weekly treatments of Taxol followed by 4 treatments of FEC given every 3 weeks. Six weeks later I had a modified radical mastectomy with lymph node removal. The last leg of my plan was 35 radiation treatments. I was also HER2+ and qualified for a study that explored new ways of administering Herceptin. This meant I began my process receiving Herceptin with each chemotherapy treatment. I was administered weekly for several monthly then transitioned to every 3 weeks until a full year passed. Following treatment I took Tamoxifen for one year, then switched to Femara, which I will continue to take for a minimum of 3 more years.

Tell me about your new normal.

My new normal is just that…normal. I feel healthy and strong but cancer definitely left its mark. Chemo treatments threw me into menopause. Fortunately, the side effects haven’t been as bad as expected. Sexually, all things seem to be the same as before. Then again, I am single so who really knows. I have gained a few pounds but only enough to annoy me. It isn’t really enough to prompt me to do something about it. My biggest complaints are severe joint pain brought on by Femara. I work out frequently and eat a relatively clean diet, which seems to help. The only other issue is the likelihood of lymphedema. So far, I have only shown minor symptoms. But I gotta say, wearing a compression sleeve is a total drag.

How has having breast cancer moved your forward in your life now?

To be perfectly honest, I feel my life has always been about writing a new story. Just when I think I have life figured out, I have to regroup and learn to navigate uncharted waters. Divorce is a perfect example. I felt there couldn’t possibly be a more difficult transition in life. Especially when the timing included adjusting to an empty nest. Little did I know how wrong I was. Cancer takes redefining normal to a whole new level.

10.28 Uncharted Waters

The post-cancer chapters of my life closely resemble those prior to my diagnosis with one subtle, yet very important, difference. Fear and worry are now only allowed very little space in my world. To me, worry is useless. It accomplishes nothing, changes nothing and benefits no one. I’ve done everything I can to obliterate it from my vocabulary.

Fear, however, is a different story. It is a sneaky little sucker that will come in and bite you in the rear when you least expect it. For anyone who has ever faced cancer, a recurrence would be the main fuel to that fire called fear.

Fear is a very fair, very human, emotion. One I respect. One I allow myself to feel. And just like worry, I refuse to let it control me. I’ve adopted this motto where fear is concerned. “Feel it. Deal with it. And move on.”

Once I learned to control these two feelings, as best as anyone can, life has become sweeter. Cancer tried to take so much from me… and it succeeded in some areas. I refuse to let it take any more than necessary. I know my Pollyanna attitude may seem unrealistic to some…which is really interesting as I am nothing if not a realist. I cling to my positive approach because I feel it is the only way to not let cancer win. Cancer is such a sinister creature. If it can’t take our lives, it wants to steal our peace and our joy. I refuse to give those up. It is non-negotiable.

I’m labelled a survivor. By definition that means I am “a person remaining alive after an event in which others have died.”

But I want to be more than that. I want to be fearless. I want my new story to be of one who embraces the ups and downs of this roller coaster called life…doing everything I can to enjoy the thrill of the ride.

Read more from Lisa at her blog My Extraordinarily Ordinary Life.

Sky’s the Limit: Dee Anne Barker

31.34.51 – She says they aren’t her measurements. What are they then? Meet Dee Anne Barker. She’s a three time breast cancer survivor and those numbers reflect her age at each diagnosis.  Today she shares her incredible story. Read and share.

Dee Anne B-1. PIC

Tell us about your diagnosis.

I’ve had breast cancer three times over the past 20 years. The first time, I felt a lump while I was in the shower that turned out to be malignant. The second time, the tumor was identified on a mammogram. One doctor thought it was nothing but a second opinion confirmed it was again malignant. This last time (yep, I’m calling it the last one!) I was diagnosed after I felt a lump late one night due to an itch I had on my breast.

I do not carry the BRCA gene mutations but was told that my breast cancer was most likely “hereditary.” I’ve had two aunts pass from breast cancer. All three of my cancer diagnosis were unrelated and considered new/primary cancers; a bit of a scientific bamboozle but one which has been treated with great caution and care.

How does one react to the news of having breast cancer time and time again? 

The first time, I was quite shocked as I was only 31 years old and 20 years ago that was somewhat unheard of (so I thought). All of the elderly ladies in the back room waiting for daily radiation kept saying ever-so-sweetly, “Oh honey, you’re too young for this. We’ve all lived a full life, but you, it’s just not right.” So, I felt rather alone and decided to tell no one except for my family and a few close friends. Not the wisest decision, but I just felt embarrassed and betrayed with my body.

The second diagnosis, I took more in stride and was a tad more comfortable with the process so I opened up to a few more people. The treatment (surgical only) was brief so I sort of glossed over this one and didn’t really deal with it emotionally.

As for third, my world came crashing down on me. It was the most serious and involved cancer. I just recently finished two years of biopsies, surgeries, a double mastectomy, reconstruction, chemotherapy, Herceptin and now Tamoxifen. I continue to feel at times, like a stranger to myself on a deserted island. But, I strive to find the meaning and humor in it all. In a nutshell, I did not keep this one a secret and pretty much announced it to the world once I felt comfortable via Facebook, Twitter and my blog.

10.25 Meaning and Humor

How has having breast cancer affected your well-being?

Clearly, I never had children and was told early on not to even try. My weight has fluctuated over the years but is on the rise thanks to Tamoxifen. But, as I say, “I’m alive, so what does it matter?!” It’s taken time to adjust to the ‘new girls’ but I’m learning to appreciate them more and more. My body and bones are full of aches on a daily basis but I’m learning to live with it and am gaining more mobility and a new level of activity as time passes. I continue to come to terms and am dealing with the lost of my breasts and the impact that it’s had on my sexual well-being. Not an easy path to travel, that’s for sure.

How are you writing your new story?

Well, this last diagnosis really propelled me to write a new story for myself in every way imaginable. And while many others do not understand the impact that this has had on my life, I am moving beyond those judgements and limitations and solely focusing on my own life’s purpose. Blogging and Twitter has altered my ability to reach out and get the honest and true support that I’ve needed. A few friendships were lost along the way which I believe cancer expedited what would have naturally happened. I now focus on my continued physical, emotional and mental health in a way that’s best for me. I will say that many people clearly don’t understand the long-term affects that having cancer has had on me. Albeit frustrating at times, I have just come to realize that they have emotional limitations that I will not allow to influence the course of my life. I don’t expect others to grasp what it’s been like to have cancer and to face your own mortality so many times, so I’m learning to just let it be without jeopardizing my own path.

You’ve touched on so many important themes: friendships, mortality, and emotional limitations. I hope we can revisit those in a future blog post! Tell me about any roadblocks you might foresee. 

I’ve been to this rodeo three times too many and figure that if I can kick these cancers to the curb, then the sky truly is the limit.

You can read more from Dee Anne at her blog Cancer, Cancer bo-Bancer.

Warrior: Beverly McKee

What to you remember about the day you were diagnosed?

I received a phone call from my oncologist 48 hours after a biopsy. Her words, “I’m sorry, Beverly, you have breast cancer” changed my life forever. My husband was waiting for the call with me. I turned to him, said “I have breast cancer. I want a bilateral mastectomy.” Then I called my mom and sister. I had exactly five minutes between the phone call and 5 kids getting off of the bus. I had no choice but to hold it together and make dinner. Spagetti with salad and green beans. I was in a state of shock but I remember the events of that evening so clearly.

10.24 Make Dinner

What was your reaction after the dust settled?

Being diagnosed with breast cancer was life altering. It felt like someone walked up to me and smashed every ounce of security that I had ever had…tiny shards of glass falling all around me. I doubted that I would ever feel secure again with such an uncertain future. My own body had turned against me. I was in danger and there was nowhere to hide. I couldn’t believe that I had breast cancer.

What was your treatment plan?

I underwent a bilateral mastectomy with expanders, 16 weeks of chemotherapy and 28 external beam radiation sessions.

I know that’s the short list. Talk to me about how treatment has affected your current well-being?

After a year of poking, prodding, cutting, pumping in poison and radiating, my body has changed so much. I have twelve new scars (I just counted them). In the course of five surgeries, I said adios to my breasts, hair, lymph nodes, ovaries, uterus, fallopian tubes, cervix, eye brows and eye lashes.

It seems logical that I might struggle with my body image after a year of invasive medical procedures. But here’s the amazing part: fighting and beating breast cancer has given me a new appreciation for every aspect of my body. I love that my body is recovering and I’m strong again. I appreciate that my lungs are clear and my bones are strong…allowing me to enjoy nature walks and long bike rides. I love to show off my new “girls”. They went from a “B” to a perfect “C” and they are soft, perky and beautiful. My hair is super short but it growing longer every day. Being proud and appreciative of my scarred, poisoned, radiated body has truly been a rainbow through the storm of breast cancer for me. I chose to embrace the differences and my message to all women fighting breast cancer is that while your life will never be the same after breast cancer, we can find happiness and acceptance.

October 17th marked your one year survivor anniversary, right? I like that you are already planning your 40th anniversary. Tell us about that.

It was frightening to hear my doctors talk about treatment options based on 5 year survival rates. 5 years? My boys would not be driving in 5 years and that motivated me to start planning my 40 year survivor celebration. I can visualize my party. It will be held on 10/17/52 on the beach of Sanibel Island, Florida at sunset. My friends, family and fellow warriors will celebrate with me as the sun is setting over the ocean. We will all be old but it will be the party of a lifetime. My “girls” will still be perky, which is one of many positives that have come out of my journey through breast cancer. In the meantime, I plan to celebrate every year.

How has having breast cancer changed you?

My journey through breast cancer has changed my life in many ways. I have adopted an “IRE” attitude towards life. This is a Jamaican phrase that means “no problem” and symbolizes an island state of mind. I strive to appreciate the little things in life and not sweat the small stuff.

Being diagnosed also inspired me to follow my passion for writing. I started by blogging for friends and family to keep them up to date on my journey through treatment. Writing has always been therapeutic for me, so I went public with my blog when I was halfway through chemo. It was exhiliating to hear from other survivors that my words helped them on their journey. I have dedicated my life to inspiring my fellow warriors and reassuring that they are not alone in their journey. My blogs and social media outlets have inspired breast cancer warriors throughout the world.

beverly-mckee

I know that feeling! Tell us about another project you are working on.

I am working on an exciting project to create HOPE for my fellow warriors.I started the HOPE project with the goal of providing inspiration and HOPE to all of my fellow breast cancer warriors. I am interviewing long term (25+ year) breast cancer survivors for the project and can’t wait to share more details when it is complete.

Do you think your professional background plays a part on how you view life now or in the way you support other survivors?

My background as a therapist put me on a quest to create HOPE for my fellow breast cancer warriors. It also helped me accept that while I could not change my Stage III breast cancer, I could control how I reacted to every step of the process. I knew that I would have bad days but I also knew that those days would pass. I chose to focus on the positives throughout my journey. I know that being positive won’t cure my cancer or keep it from coming back, but it makes my life much more enjoyable. The past year of my life has been the very challenging and I do not want to repeat it, but I have gained so many life lessons that have changed my life for the better.

I really admire your – for a lack of better words – chill attitude. Do you foresee any future roadblocks? 

The biggest roadblock for me is fighting the loss of security that comes with a potentially life threatening diagnosis. The follow up visits, random aches and pains and fear of metastasis can be anxiety inducing. I sometimes have to work at my “IRE” attitude and get back to enjoying life. It also helps to draw on the strength of my fellow warriors.

If you are or know of someone who has beat the disease for more than 25 years, you can contact Beverly at bcwarrior40@gmail.com or through her website at www.breastcancerwarrior.org. Please consider your aunts, grandmother, mother when thinking about long term survivors.

Soul-Searcher: Lynette Zwerneman

Today’s post comes from Lynette Zwerneman. It’s a lengthy read, full of intimate and soul-searching details about how one comes to accept life after a breast cancer diagnosis. Such beautiful descriptions from a truly interesting journey. Read and share.

Lynette-Zwerneman

Tell us about your diagnosis.

For several years I had been experiencing health issues, including veritgo, chronic pain and fatigue. I was also under a great deal of stress due to life and financial issues as a single mother.  Last July, while slipping on a camisole, I felt a lump on the top of my right breast. I knew it was wrong. Though I did yearly exams with my doctor, I wasn’t real good about self exams and had never had a mammogram as I assumed I was “low risk” not a smoker, nursed children. My father had died of lung cancer at 62 and had worked around asbestos on the railroad and both his parents had died of cancers – abdominal masses- no female in my family, paternal or maternal relatives had been diagnosed with breast or cervical cancers.

My health care provider did not feel what I felt but she did order a mammogram. The mammogram was “clean” but because I felt a mass and had other health issues, the radiologist ordered an ultrasound which did show a mass in the region where I found a lump. I saw what he saw, it looked to me like a little starfish with arms beginning to sprout. It didn’t look good. The radiologist categorized the mass as BIRADS 3, probably not but maybe cancerous and I was advised to return for another screening in three months. I wasn’t comfortable with this recommendation and asked for a biopsy which did indicate stage I invasive ductal carcinoma. Estrogen/Progesterone positive, HER-2 negative. A relatively small tumor estimated to be 1 cm and the most common type. I had a good prognosis but mastectomy was recommended as the tumor looked like a Grade III and considered “aggressive”.

What was your reaction?

As I told the doctor – a stand in for the surgeon who had preformed the biopsy, I was “shocked but not surprised.” The community I live in has a higher rate of breast cancer diagnosis and death than the nation. I have been surrounded by diagnosis, caregiving for my father during his treatment and death from lung cancer, a care giver for a co-worker and former relationship during colon cancer treatment and supporting another coworker and friend during her diagnosis and treatment. I had been sick for so long, I knew I could not handle chemo and wondered about other treatment. Watching my father’s horrific death from lung cancer in 1996, the continual assault on his body by treatment of the day, I had already vowed to never undergo chemo. As I had been living with the sense of dying a part of me thought that was where this was headed. And although I deeply love my children and grandchildren, I had been so sick and struggled for so long I actually felt I didn’t or couldn’t care if I lived or died.

What kind of treatment options were presented?

Treatment truly was “one step at a time”. I knew I wanted “It” out so I chose to leave my small rural healthcare system and was referred to a state hospital where the surgeon thought I was a good candidate for lumpectomy and also sentinel node biopsy. A month after diagnosis – wanted to get in sooner but surgeon said he thought it was a slow grower – I got “It” out. The surgery went “beautifully” so I remember the surgeon telling me as I was coming out from anesthesia – clean margins and no sign of cancer in nodes. It was such a relief to have chemo “cancelled.” I went home to heal and think about radiation and other adjuvant treatment. However within 10 days, the surgeon called me and said that due to what “they saw under the microscope” as far as the actual tumor, chemo was back on the table. I was devastated, continued the online research I had been conducting all the way along and found the Oncotype DX test. The surgeon declined my request for the test – possibly because it is expensive and I am a Medicaid patient. I left that healthcare system and was able to be seen at Seattle Cancer Care Alliance. There, I was told again I should consider chemo and also not undergo the partial radiation I felt was best for me. Though, the Seattle doctor said “he would lay money” on the fact I would have a high score – indicating greater chance of recurrence and need for chemo and more aggressive treatment, he did order the Oncotype DX. Amazingly, I had a low score. Chemo was still recommended but I felt comfortable declining. Because of the low score, I was a candidate for partial targeted radiation over the course of 3 weeks. I was prescribed Letrazole, which I took for six months before switching to Anastrozole when joint pain and other side effects became more than I wanted to deal with.

How has having cancer affected your well-being?

I was probably already in menopause by the time I received my diagnosis, which was a good thing as the Aromatise Inhibitors seem to be “better” and more effective as I understand with less side effects. As I moved into menopause, and also grandmotherhood as a single woman, my focus had already turned to other things in life and I had not been concerned about sexuality for some time prior to my diagnosis. I don’t miss it actually. I am not ashamed of my body – age, surgery. I don’t care to share it with anyone and am happier about where I am at in that regard than I ever have. The other thing, my last relationship was with a man who had a colon cancer diagnosis. I cleaned up a chemo spill from a bag he was sent home with and slept next to him while he received treatment. Four years later, I got a cancer diagnosis. You have to wonder …

I  struggle to keep weight on – total loss is 40 pounds. Couldn’t lose weight before. No sign of metastisis. I did quit eating meat when I got my diagnosis and dairy and had already cut out alcohol and was pretty organic. But at the start of the weight loss, I was downing two pints of Haagen Daaz a day just to try to keep weight on. My body in many ways, despite treatment for chronic pain, joint swelling and other issue feels younger than in my 40s. I am now 54. It’s a mystery.

You went on quite a soul-searching adventure after your diagnosis. Please share it with us.

I left Seattle Cancer Care in tears last October because I was refused the radiation therapy I wanted and chemo was still recommended. Deep down I wasn’t sure I wanted to live, to continue fighting. I knew I needed to see my adult children. And I knew they needed to see me – my daughter who was finishing her last year at Oregon State University, a point guard on the women’s basketball team – was disappointed that I would probably miss her last year of amateur play; my son and his family including a grandson who lived in Denver and another son, my oldest and his three daughters who lived in Louisiana.

I had driven to Seattle, I could not afford to fly. So, I drove to Oregon and spent a couple days with my daughter. And then I headed south and across country to Louisiana, stopping in Utah’s majestic Canyonlands, where I had found solace and comfort in other trips. It’s the red rocks and the desert, the warm … I drew strength from that environment. I knew I wanted to see Mesa Verde, the home of the Anasazi who had moved their homes from the top of the bluff to the bottom of canyon to underneath the ledge before disappearing. Sleeping in the car for a few hours then driving, driving … I was able to spend an afternoon at the Mesa. Touching rock, marveling at the structures, understanding the concept of what people do to survive …. You adapt, you adapt, you adapt and perhaps you leave everything behind to survive. Then on south and across through New Mexico stopping at Truth or Consequence to soak in the hot springs spa, then across Texas. It was perfect just to be in the car. At a certain point I realized I probably had the idea that perhaps if I just kept going, cancer wouldn’t catch up with me.  Spending precious time with my Louisiana people, my granddaughters, reticent at first, a little afraid of Gramma, who knows what they thought three from one year to six years of age, they had been praying for me. I suppose they thought I might die or be almost dead. But here I was … driving up, real, alive. Then it was north to Denver but first a jaunt off to Taos. There was an adobe church I had found on a previous trip. On the wall was a painting of Mary in the Desert appearing before a shepherd. I wanted to see that painting. I wanted to pray in that church. When I got there, I felt empty. I knew I should pray for healing. But I couldn’t even do that so I got down on my knees and I prayed simply for the desire to live. I began to cry. That was something at least. I got up and left the church. When I got to my car, I received a call from a doctor in Montana who was at a hospital affiliated with Seattle Cancer Care. This doc was young, just out of Harvard. I had met with him prior to leaving for Seattle. “I am just calling to check on you? We’re concerned you haven’t made any further treatment decisions.” I began to cry again. “I’m in Taos, at a church. I don’t know what to do.” I said. “What do you need from us,” the doctor said. “We are here for you.” No one had said that to me yet. I told him I wanted to wait for the Oncotype results but I would make an appointment too see him and a radiologist when I got home. From that point, I decided to fight. I saw my other son and my grandson in Denver. I went home to my small town in Montana. I prepared to do what I knew I needed to do to live.

10.23 You Adapt

It took much longer for my Oncotype results than expected. Several weeks went by. Finally I had an appointment with the doctor who had called, who is now my oncologist. I was prepared for anything. He went over the chemo options, the mentioned radiation and hormone therapy. Finally I asked “so what was my score doc?” He shuffled thru papers, cleaned his throat and said “well that’s the interesting thing, you got a 15 … (out of 100, 18-20 break point for “low” which means chemo not recommended) I jumped up, arms raised, fingers in the air and walked around the room. “But chemo is still recommended,” he said. “Deal is a deal doc,” I said. We had agreed low score meant no chemo; high score meant chemo; medium score, we’d talk about it but probably chemo.

During this time I left my home of almost 30 years, and older house with lead paint and other issues – never spent another night after Seattle, staying at a friend’s house which was more comfortable and I felt healthier. I don’t hesititate to tell people how I think or what I feel – I try to pay attention to my body and my enviroment. I am living the life I was supposed to live, back at my family property. Trying to farm. Taking care of my mom, whom I had at least a tempestuous relationship with. A former reporter and writer for several years, I am trying to document for myself, my family and others what “happened” and still not sure what did. I don’t know what the future holds but I do know that there is something beyond the day to day grind. Sometimes God grabs you by the shoulders and turns you around to face your mortality. I am not greedy for Life but I do want to Live. I got a chance to Live. How long? I don’t know but I have no regrets about the decisions I have made the past year. I know that I will have more decisions ahead but, one day at a time.

What lessons have you learned?

Perhaps the greatest lesson of “surviving” cancer or getting through the first year is … you do learn you can to “deal with it.” I have given up several times but something always happens to keep me going. And there’s my family, my children and grandchildren. They keep me going. I won’t give up because I want them to know that you never give up …

Final thoughts?

I don’t recommend anyone do anything I’ve done. I have always questioned things. I have friends who have gone through treatment in the traditional way, and they are doing well. I just couldn’t do it that way. That’s just me and I am very grateful to have made more personal choices even those which are becoming more accepted. I guess it’s a “good” time to get a diagnosis, if it was going to happen. I am grateful to every woman who went thru this before me, even those who wouldn’t or couldn’t share their experience. Unfortunately, cancer seems to be more and more a common experience. There has to be an answer. There are no accidents … I demand answers and options not just for me, but for my daughter, my granddaughters. It is a heavy burden in a sense that my family’s breast cancer history began with me.

Team Roxy: Roxanne Martinez

Today’s incredible story comes from Roxy Martinez. At thirty-years-old she sought medical attention after discovering a lump in her breast. Little did she know she was in for two HUGE surprises. Read and share.

team-roxy

Tell us about your diagnosis. 

I felt something unusual on the side of my breast one night as I was getting ready for bed. I performed a self exam and discovered a lump. I made an appointment with my primary care physician, which is when I learned I was pregnant. A week later, after a breast ultrasound and biopsy, my doctor confirmed that I had triple negative breast cancer.

A pregnancy and a breast cancer diagnosis. What was your reaction?

I was shocked and in disbelief. With no history of breast cancer in my family and at the age of 30, it felt completely unreal that this could be happening to me. With an unknown prognosis, I knew I was in for the fight of my life. I was also determined to bring my child into the world, regardless of what it would take.

I have met several women in the cancer community who were diagnosed while pregnant. Tell us what treatment options were presented considering you were growing a baby.

In order to continue with my pregnancy, the recommended treatment plan was an immediate mastectomy followed by chemotherapy. I began chemo in my second trimester. I completed seven rounds of chemo before it ultimately set me into early labor. On the day scheduled to be my final chemo, I instead delivered a beautiful, healthy baby girl named Serenity. Six months after Serenity’s birth, I underwent a preventative mastectomy of the remaining breast.

First, congratulations on the birth of your daughter. I can’t even imagine undergoing chemo while pregnant. Talk about exhausting! Let’s chat more about how  treatment has left its mark on your life.

Treatment for breast cancer has affected my health and well-being in ways that I never imagined. Since active treatment ended, I have continued to battle chemobrain, a reconstruction infection, lymphedema, neuropathy, fatigue, insomnia, depression, pain and financial issues due to cancer treatment. The lingering side effects of cancer treatment have been challenging and frustrating. However, I know that I can overcome anything as I continue to work toward my “new normal.”

What’s your “new normal” look like?

After conquering breast cancer while pregnant, I felt an urgency to live life to the fullest and on my own terms. I also felt a new calling in helping other women battling breast cancer.

Fresh out of treatment, I launched my marketing consultant firm, Roxstar Marketing. This allowed me to do what I love, spend time with my family and give back to the community. Through my community organization, Team Roxy, I work to educate others about breast cancer and support newly diagnosed women battling the disease.

Although my journey with breast cancer has been a bit bumpy, so much greatness has come out of it. I am determined to move forward and turn my experience into something positive.

Roxy Martinez

You’ve battled so hard. Do you foresee any future roadblocks?

Despite the challenges that life after breast cancer presents, I do not see any roadblocks ahead of me. In fact, because of my battle with breast cancer, I feel that nothing can stop me now.

Strong Mama: Sarah Malin-Roodman

Meet Sarah. Diagnosed with thyroid cancer and breast cancer in a span of three years. She’s a nurse practitioner with a passion for women’s health and her sweet three-year-old, Nina.

sarah-malin

Tell us about your diagnosis.

I found a lump myself and requested a work-up despite the doctor suggesting it was only lumpiness from breastfeeding. I *knew* I had breast cancer during the biopsy and ultrasound when they began scanning my lymph nodes. It was confirmed a few days later.

Ah, yes. Red flags when the tech start with the ultrasound wand deep in the armpit. What was your reaction?

I was scared, but since I had just previously dealt with thyroid cancer, it did not hit me as hard as I expected. I knew the drill of just getting through each day and the next treatment. I was a new mom with both cancer diagnoses and I just kept wondering if I would get to be part of my daughter’s future. It was confusing to simultaneously be considering my mortality and my daughter’s whole life ahead.

I grappled with those exact feelings. Tell me what sort of treatment you underwent.

I had a lumpectomy then four weeks of radiation. Now, I am on Tamoxifen for the next 9 years.

How has breast cancer impacted your life?

The biggest impact has been on my fertility or just letting go of the idea of more children. I have since had an oophorectomy so it is no longer an option at all. I have some ongoing fatigue and have had a modest weight gain.

Loss of fertility was really hard for me, too. I was bound and determined to have another baby but once I learned that my body wasn’t responding to the monthly Zoladex injections and how it was in estrogen overload, I knew something had to give. I find myself still grieving about it.

What has having breast cancer taught you?

I have learned that I am amazingly strong. In a only a short three years, I dealt with two cancers and the loss of my job all while raising a brand new baby alone. And I did it with grace. I know I can handle anything now.

I love that answer!

10.21 Amazingly Strong

Do you foresee any future challenges?

I miss being a healthy, ordinary person without any health concerns. I now have to carry the worry of the next bad news. I know I have been hesitant to seek out a new romantic relationship for fear of burdening a new partner with my heavy story.

Battle Goddess: Leslie Jones

Meet Leslie Jones. A busy mom battling a family history of breast cancer. When her head told her it was nothing, her gut told her something else. Read and share.

leslie-jones

Tell us about your diagnosis.

I felt a lump in my left breast while I was pregnant with my daughter in 2009. My mother was instrumental in getting me in with a doctor at the University of Kansas Medical Center. I was fortunate at that time that it was just a cyst and not cancer, however my doctor convinced me that it would be a good idea to have the BRCA genetic testing done since my mom had breast cancer at age 27 and I was considered high risk. The results revealed that I was a carrier of the BRCA1 gene mutation.

About two years later, I felt another small lump in the same breast. At the time, my marriage was falling apart and I was a full-time stay-at-home mom of four. I knew I should have gone to my doctor about it, but kept telling myself that it was just like the other one years before. “Just a cyst” and “No big deal.” Even though I kept telling myself this, I knew deep down it was something more than that but I ignored it.

My husband encouraged me to go to the doctor, but I was bull headed and refused. He said, “Well, if you don’t care about your life, then what can I do,” and I swept it under the rug. Looking back now, I know he was trying to tell me that my life was worth living and that I should pursue having this new lump looked at.

I eventually was diagnosed with stage IV ER/PR+ breast cancer. There was breast cancer found in my sternum as well.

Tell me about your treatment.

I underwent a six cycle regimen of chemotherapy which included the usual suspects: Adriamycin, Cytoxan and Taxotere. Followed by a few more rounds of Carboplatin and Cysplatin.  After chemo was complete, I had a double mastectomy and a full hysterectomy because of the BRCA1 gene mutation. I had to wait for the scar to heal to start radiation treatment but eventually completed 28 consecutive daily treatments.

Our bodies go through so much trauma during treatment. Tell me about your self-image through all of this.

My body image has changed so much. I have no boobs, however the good news is my hair has finally grown back. My eyebrows and eyelashes are still lacking. I’ve gained a ton of weight partly due to the hysterectomy and partly do to over compensating for the foods I was not able to enjoy while on chemo. The crowns on my teeth have fallen out, which now means I have to have dentures. I don’t feel like me and I struggle with how to be happy with who I am now.

Your feelings are not uncommon and I am 100% certain every single woman who submitted a story will attest to this. You’re in a critical part of your recovery right now and like Becca Smith wrote, I agree that most of us deal with a little PTSD after this kind of life altering diagnosis. 

Are there any positives (and I almost cringe asking that because, ugh…cancer!) from any of this?

It’s really difficult to answer this question because I still don’t know exactly how I am moving forward in my life. I do know that my marriage and family are important to me. Finding a career path is important to me even though I haven’t found one yet. Everyone tells me what a positive attitude I have when I speak about my cancer experience, but let me tell you I wasn’t so positive while I was going through it.

I never realized how walking through Sam’s Club would be such a big deal to me. Last year, I had to ride one of those scooters, and now I can walk the entire store and walk on the treadmill for two miles. There were times during chemo I wanted to give up, and I know now that I am strong enough to do it again if I have to. Before, I took my family for granted, and now I know how much they love me and are there for me no matter what.

Beyond personal challenges, are there others?

The fear of the unknown and stressing over financial matters is very difficult to overcome. I am constantly reminded of what I can’t do because of what my body has been through the past couple of years, and the fact I have to wait to do certain things is even more frustrating. My best friend Melanie, doesn’t let me take anything for granted and always tries to point me in a positive direction with my mental attitude! I keep praying there is a light at the end of the tunnel.

10.18 LightTunnel

Leslie continues to battle and will be participating in American Cancer Society’s Making Strides Against Breast Cancer event later this month in Kansas City, MO. Your consideration in donating to Leslie’s team fundraising page is much appreciated.

Baby After Cancer: Miya Goodrich-Phillips

Today’s post is from Miya Goodrich-Phillips. A writer and stay-at-home-wife, a breast cancer diagnosis disrupted this newlywed’s plans for a baby. She’s been chronicling her journey to motherhood and shares with us what has changed in her life since being diagnosed two-and-a-half years ago. Read and share.

miya-goodrich-phillips

Tell us about your diagnosis.

I found a lump in my right breast. I had just checked myself a month before and there was nothing there. It kinda came out of nowhere and grew pretty quick. The official diagnosis was stage 2, grade 3 ER/PR+, HER-2 negative with 2/10 lymph nodes.

Aggressive cancers in young women tend to be fast growing. What was your reaction when you learned it was cancer?

I had to wait almost a week for the results of the biopsy, so during that time I tried to prepare myself for bad news. Nothing can prepare you for those words, “You have cancer.” I was shocked. I couldn’t breathe. I was scared. I was sad. I didn’t feel too certain about anything anymore.

What kind of treatment options were presented?

Because I tested negative for the BRCA gene mutation, I decided to have a single radical mastectomy and a total of ten lymph nodes were removed. I followed that surgery with chemotherapy, radiation, and two reconstructive surgeries. I also have to take Tamoxifen for 10 years.

What kind of challenges have you faced with either your surgery or ongoing treatment?

I’ve been pretty vocal about my fertility issues. That’s truthfully been the biggest problem for me. Breast cancer has put many restrictions on my ability to conceive a baby. Other than that, I have some trauma on my ribs from all my surgeries, it flares up now and again and can get very sore and uncomfortable. I also can’t move my right arm as well as I used to.

How has having breast cancer changed you?

The way I look at life has completely changed. All my priorities changed in an instant. I was depressed most of my twenties and allowed that to become my identity. A lot of my personal relationships suffered because of it. Having a life threatening illness lifted that fog and weight off of my shoulders. I feel I was given a second chance at life. I’m grateful to be here and thankful everyday. I have renewed relationships with my parents and have a wonderful marriage now! Adversity brought me to a higher sense of self and led me to my spiritual life.

10.17 Adversity

Do you foresee any roadblocks?

Currently, the only road block for me is having to wait to have children. I’m hoping that everything goes well with the embryos we froze.

You can follow Miya’s journey to becoming a mom after breast cancer at Baby After Cancer.