Breast Cancer Videos - Beth C



Breast Cancer Survivor BethC

Watch as Beth C takes us through her journey with breast cancer.

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Video Transcription

Dealing with Anxiety

Like I said before, I did experience a lot of sleeplessness and I later realized that it was a side effect of the Adriamycin and Cytoxan that I was getting together. The Taxol, when I received that I would also receive a round of steroids and Benadryl. And I thought that was definitely a cause of my sleeplessness. I had some anxiety and, like I said, my advice to you if you are experiencing anxiety or sleeplessness, don’t hesitate to take the medication that the doctors prescribe. I was very hesitant, I was like, “Oh, I don’t need that, I don’t need that. I’m fine,” but there were nights that I would take just even a half of a tablet and it would take the edge off, and it would allow me to rest peacefully and that’s-- the sleeplessness was-- it could be many a nights, it was really, like, why is my mind just flying. My body is exhausted, but my mind just wouldn’t stop. So, my advice is to take the medication if it’s prescribed for you.

Change in Appetite

I did not experience a change in my appetite to any great degree, a little bit at the beginning when I was receiving the ANC treatment. During that time, like I mentioned, I had a lot of mouth sores on the inside, but they prescribed a rinse and it definitely helped. I had a lot of ointment that I was trying, that helped also on the outside. So, no, I can’t say I-- things tasted a little weird at times, but I didn’t experience any great weight loss, I didn’t experience any great weight gain. So, appetite was not really greatly affected.

Coping with Change

My suggestion for coping with change as it’s related to cancer is, again, being patient. I remember being very anxious and wanting treatment to begin because from the time you’re diagnosed to before treatments begins, yeah, you probably have a couple of surgeries, but you also have an enormous amount of appointments that you have to attend. I felt like my mind, it was like-- that was so overwhelming. I had many scans, you have to have a PET scan, a bone scan, a MUGA scan. It felt like every time I was turning around I was getting some kind of scan. And it is a whirlwind, and I just remember thinking I am not coping with all this very well. I needed treatment to begin so that I could settle into my new normal. And I think that’s what it was. My life was just tossed upside-down at a very crazy time in my world, being the end of the school year, and my daughter was graduating from high school. We were deep into college applications and those decisions, and parties, and it was-- just the timing was awful. And I just felt so out of control at a time that I needed to be in control the most. So, just wishing--- I began feeling like I was wishing my life away. I remember thinking I can’t wait until… and it would be my next appointment, or the next scan, or the next-- and then finally when I received my first treatment, my first chemotherapy treatment, I was like, okay, this is my new normal now, because all the scans were behind me, it was just now I knew my schedule, I knew my treatments times, and I just wanted to know what to expect. That was the best way for me to deal with-- dealing with the change and the difficulty with feeling out of control.

Diagnosis

My primary diagnosis is invasive ductal carcinoma triple negative breast cancer. And this means that it started in the duct and it infiltrated into the fatty tissues around it. The triple negative means that it’s not hormone-receptive, meaning all three of my hormones are not fueling the breast cancer cells. Triple negative, I was told, is a very aggressive type of breast cancer. It only occurs in about 15 percent of all breast cancer. It’s a very aggressive and it’s a very high reoccurrence rate. So, because of that they treat it very aggressively. There’s not a target treatment for triple negative. There’s not a targeted behavior or targeted treatment, so they treat it as if it’s a stage three or a stage four. So, needless to say my surgeon was wrong, I didn’t need just radiation, I needed some very aggressive chemotherapy and radiation.

Fear of Cancer

To people that have a fear of cancer I say it’s not as scary as it sounds. Never once did I ever fear that I was going to lose my life. I felt that I was in charge, that cancer was not in charge of me. I was going to decide how it was going to affect me. My opinion on screening and avoiding certain-- avoiding risk factors, eating cancer-preventing foods, like broccoli and Vitamin A, is obviously screenings, the mammogram screening saved my life, so I’m all about the screenings and being proactive and taking charge. We have so much power over our own health. When it comes to the risk factors, I don’t smoke, I exercise, I maintain a healthy weight, I eat lots of fresh fruits and vegetables. So, I’m a little bitter. I have not changed my lifestyle, because I feel like I live a healthy lifestyle. I guess when your number’s up, you know, that happened. Like I said, I think that’s-- it just doesn’t make sense. It didn’t make sense for me to be able to have breast cancer when I felt like I was doing everything correct and living a healthy lifestyle. So, it was just the luck of the draw, I guess.

Gifts for Cancer Patients

Great gifts for people with cancer are cards. I loved receiving the cards. It just made me feel so loved. I loved the funny cards. I loved the little comments, the little supportive notes that they would-- that my friends would add to them. At the big celebration, the Beth kicked cancer’s butt party, I received a gift cards for massages from groups of people. The meals, several people would drop off meals for us, particularly during the summer when I was receiving the ANC treatment. And just the notes, the thinking of you’s, that’s what’s really special.

Life before Cancer

Hi, my name is Beth and before I experienced my triple negative breast cancer I had an awesome, wonder, wild life. I still do. I am a mother, a wife. I have four children. At the time when I was diagnosed my daughter was 18. Her high school year-- a senior in high school. My son was 15, my other son was 13, and my other son was 12. I worked fulltime. I’m an intervention specialist at a wonderful Montessori school in the neighbor. I’m also-- I work part time for Weight Watchers. I’m a leader and I do a couple of their meetings a week. I lost a significant, about 85 pounds, with Weight Watchers. Have maintained that weight loss. At the time I was diagnosed I was like a week shy of celebrating my 8-year anniversary. And to be truthful I was approaching that time with just this wonderful feeling of health and I was feeling so strong. So, breast cancer and me at that time didn’t match at all.

Lost Options

Before being diagnosed with triple negative breast cancer I was an avid runner. I would run most mornings before I would go to school. It was definitely a reason why I was able to-- I had been able to maintain my weight loss. Also do a lot of, a couple times a week, strength training class I would take. I did continue with some level of my exercise and running. I definitely slowed down and I accepted that. I kind of did a lot of power walking, and I couldn’t go as often as I did, as I regularly did before. One point in time my knee blew up and just out of the blue I had a huge, swelled up knee. And it just kept swelling for like two days and the doctor said that was part of it. Of course she had to run a scan to make sure there wasn’t anything wrong, but I really believe the reason I was able to get through what I got through with such positive thoughts and positive ways was because of my exercise routine. It was very much established prior to being diagnosed, and yes it had to be modified and I had to adapt it and I had to accept that, I continued with it to a different level and that was okay. I’m now-- I’m slowing building back up. My endurance is certainly not where it used to be. I refuse to believe it’s because I’m getting older. I still blame it on the chemo and the drugs, but I truly believe that my exercise routine is what-- just so helped me stay positive and focused through all this.

Metastases

My triple negative breast cancer has not metastasized, which means it has not spread. After the lumpectomy I’m told that they had clean margins and they had no reason to believe-- and then the lymph nodes were clear, that they had no reason to believe that it had spread anywhere else. So, I saw my oncologist who-- she’s the one that set up my treatment.

Perspective on Life

Through my cancer journey my perspective on life has changed. I know it sounds so cliché-ish, but I truly live life every moment to the fullest. Right now I’m so appreciative of where I was and where I’m at now. I’m kind of in a holding pattern with my cancer. I’m shooting for that five year mark, but right now I’m shooting for two years and that’ll be next month. And then I’m shooting for that three years. So, it’s definitely has changed in the sense that I truly appreciative-- I don’t take anything for granted. And actually being two years out of treatment, it kind of-- I felt there’s been times that I felt like I’m slipping back into life being automatic. And that’s what I’ve learned, is life isn’t automatic and you can’t take it for granted. And right now I’m not living-- I’m trying to find the balance between keeping a realization that it very well could come back, that I have another chapter, and I do sometimes feel that this chapter’s closed, I sometimes feel that there’s another chapter that lies ahead. Will it beat me? Never. But do I have another chapter? Sometimes I believe that. And then other times I don’t want to think that. So, there’s a balance between being realistic with the triple negative diagnosis and not worrying. So, I do, I just so appreciate everything I have in my life. And as a result of it, as a result of the cancer, it’s-- I’m blessed. I’m truly, truly blessed.

Place of Care

I was treated at OHC, which is Oncology Hematology Care. Loved that place. It was-- the people were awesome and the nurses were so caring. When I-- my mom always wanted to come with me, so she was there at every chemo treatment, she was there and they always made sure there was a place for her to sit and to be comfortable. They were so understanding. Some of the treatments when it wasn’t a drip and it was a push through my port, I would just sit there and cry as I watched it go through me, because with the Adriamycin and the Cytoxan I was every three weeks. So, the week I got it I was really icky, it could’ve been worse, but I was not well. I didn’t feel good. The second week I was just so tired, so I spent so much time on the couch. But then the third week I would feel fine. I felt completely like, okay, I don’t have cancer, I’m fine. So, then when I would go back to get another treatment it was very emotional, because I knew what lied the next-- what the next week or two would be like. And it wasn’t terrible. I didn’t have, honestly my side effects were minimal I want to say. They weren’t great, but I wasn’t nauseous, I wasn’t-- I was just so fatigued, and I was so tired, and I would think I could get up and do something. I remember one morning it was in the summer and I remember getting up early and I cut up a watermelon, a whole watermelon. And then I was-- like, by the time I got done I felt like hit a wall. I remember laying on the couch and then my youngest son got up out of bed and came down and he looked at me and he said, “Oh, mom. Is today going to be another couch day?” Broke my heart. That was not me, because I’m active, I’m busy. I’m really good at staying busy, and for me to be laying on the couch was just not me. And I think that was the hardest part, the fatigue.

Quotes

My favorite thought during my cancer journey is we’re making it through, slowly but surely, with faith and love and hope, I knew that we were going to get through this. And when I say we I mean my family and I. When I was first diagnosed prior to beginning my treatments, my children and I made a chain link out of paper chains and they were all color coded. And there was four of them for the ANC treatment, then there was 12 of a different color for the Taxol treatments, and then there were 33 of a different color for the radiation, and we hung that in the kitchen. And after every treatment one of my kids would tear off a link. And I think that was-- that idea, I think, I came up with that idea to help my children, but I realized that it helped me just as much. It was really good to see it disappear, and how much progress we have made, and we were getting to the end. And I will never forget that thought, because at the end of treatment we had a big old party, my husband threw a huge surprise party for me. And it was-- that chain link was very powerful to me. It meant a lot to myself and also for my children.

Side Effects

As a breast cancer patient, what lumpectomy side effects, chemo side effects, radiation side effects, and complications did I encounter? My side effects from the chemotherapy, from the ANC, the Adriamycin, like I said, I had four rounds of that, and then I had weekly treatments for 12 weeks of Taxol. My biggest side effects was fatigue. I will say I was exhausted. I had a lot of mouth sores, a lot of dry mouth, blisters on the outside of my lips, mostly during the ANC. Headaches, I just remember how bad the headaches were. And then I had the tingly fingers and the tingly feet, but that didn’t last too terribly long. And then the radiation, I had nothing. I didn’t even burn. I will say I was tired. I continued to work. My four rounds of the ANC lasted all summer when I was off of work. And then the first week of school is when I went to the weekly chemo of Taxol and I received that weekly for 12 weeks. And then I had 33 rounds of the radiation after that. so, I wasn’t sure, my plan was to work, but I wasn’t sure if I was going to be able to maintain that schedule. And what happened is-- oh, the lack of sleep, I will say that the insomnia. And I had no idea at the time, I just figured-- I always had insomnia the night of treatment. And then the next day I was done and I had a hard time getting up to be able to go to school with a clear head. So, I didn’t realize it was a side effect until after it was all over. I just figured that’s just what it was-- I don’t know what-- it’s hard to describe, but I wasn’t aware, I just knew that a lot of times I would have a hard time sleeping. I remember telling my doctor that I didn’t need the anxiety medicine. I was fine, I was fine. And I really didn’t accept those were beneficial, that medication was beneficial, to help me rest and help me sleep. The other thing was, like I said, the headaches were awful. And actually after the ANC, the Adriamycin and the Cytoxan, the day after I had to go back, and I had to get a shot. The shot was Neulasta. That shot was horrible, I’m sorry. It did something about bringing up my white blood cells count, so that was really important, but that shot, the side effects of the shot, is what was miserable. The side effects were really tough to that. I didn’t have a lot of nauseous feeling. There were times, but I had medication. They’re really good at giving you that and kind of telling you that you had no business feeling sick if you took your medicine in time. After my first round of the ANC, day eight was the biggie. Day eight is when my scalp started to hurt and I couldn’t understand why my head hurt. I remember being outside in the garden, the wind blowing, and I had real short hair, and the wind just moving my hair hurt so painful. So I quickly Googled why does my hair hurt and everything I read it was, oh, your hair is preparing to fall out. So, the next morning, low and behold all around the perimeter of my scalp is-- my hair was falling out. That was pretty wild. I think I was kind of intrigued by that. But it was two days later after that is when I called my girl and said, “My hair is dead.” I didn’t feel comfortable washing or styling it whatsoever. I didn’t want to touch it, it just felt dead. And that’s when I opted to have it taken off, so we shaved my head. All my kids had a chance to cut mama’s hair. What can I say? I later look back and think once I got used to being bald, it was just hair, it didn’t bother me. It was just hair. Another side effect from the chemotherapy was what they call chemo brain and it is so very real. And it lasts a very long time, and it gets worse as you go on. It’s more of-- I always knew what I wanted to say, but I had a hard time finding the words to say it. So, I always felt like I was thinking under water, so to speak. I would try to have meetings at school and I remember telling folks, other co-teachers, that I think I need you to cover-- I’ll let you know if I need you to step in for me. Nobody else really noticed it they said, but I just couldn’t think clearly. I knew what I would want to say, but I could never find the words. And that stuck around for a very, very long time, even through radiation and after my treatment was concluded. That continued. It definitely is gone now. I sometimes say it’s because of that, but it was bad, and then it stuck around for a long time, but then it got better.

State of Condition

I consider my breast cancer to be in what I would say partial remission. I finished treatment in January of 2011, so in January of 2013 it will be two years since treatment. Because of the high reoccurrence rate with triple negative breast cancers, the first three years are critical for reoccurrences. So, I still have my port, didn’t even mention that I had port placement surgery, which was nothing, no big deal, but that’s how they access to give me my chemo. So, I still have my port. They want me to keep that for at least two or three years. So, if I can get three years without a reoccurrence, that’s fabulous. Five years is when they will consider me in remission.

Symptoms

I had no signs of triple negative breast cancer. How my journey started was I went in March of 2010 for my annual mammogram. The mammogram van comes to our school every year and it’s just so convenient, so I always get my scan done there. Then I was called back, no big deal, right, everybody gets a callback is what I thought, but it was the technician who was doing the ultrasound that behaved very suspicious. He told me it wasn’t just a cyst because he could tell by the fluid, but he wasn’t telling me what I thought he was telling me he kept saying. He became very nervous, he asked if I had come with anyone, because he would have liked to talk to them. I said “I came by myself.” I hadn’t even shared any of this with my family yet, because I didn’t think there was anything to share, but the only thing he told me was that I needed to contact a surgeon. So, when he left the room I remember saying to the nurse, “What was wrong with him? What’s going on?” She said, “He’s just worried that when you walk out of here that you’ll fall apart.” And I remember saying to her, and I know it sounds so superheroish, but I remember saying to her that if anyone has to be told that they have breast cancer today, it could be me because it picked the wrong body. And I had that mentality from the get-go. I always just felt, I don’t know if it was the timing of my diagnosis being so close to the anniversary of my weight loss, but I never accepted it. It just never worked with me. So whatever was going to lie ahead I was ready for it.

Treatment Decisions

Okay, so I had-- because it was triple negative we had-- I received chemotherapy. I had three different types of chemotherapy, and I had radiation therapy following that. My chemotherapy involved Adriamycin, red devil is what they call it, and it truly is, and I had Cytoxan. So, it was called ANC, it was the cocktail, they called it. I received ANC. I had four rounds of it three weeks apart, so I received my first, and then three weeks later I received the next round, and so on, and so on. And that was all through the summer. I had my first round at the end of May, which was right at the end of school. Prior to my first round of chemo, which was right around my daughter’s graduation from high school, we decided to have some fun, my daughter and I. And I knew my hair was falling out, actually after my first visit to my oncologist I remember saying to myself, I walked out of that doctor’s appointment with a prescription for a wig, for antianxiety medicine, and two medications for nauseousness. And I was floored, I was really perplexed. I was just in a whirlwind. And I remember telling my daughter that I was going to be losing my hair. And we decided to have some fun. So, the night before my first round of chemo we dyed my hair red. Never have I ever dyed my hair out of a box auburn red, just my daughter and I. We had so much fun. And as a result, at school, I knew I wasn’t going to wear a wig, so I had told everybody at school. I felt that if I was proactive with letting everyone around me know what was going to happen to me that they would be more comfortable and I would be more comfortable. I think it was my way of being in control to be honest with you. But I remember telling everyone that I wasn’t going to be wearing a wig, I would have a scarf or a hat on, and as a result they threw this big hat pink party for me where I received all sorts of really cool hats and scarves, but the one thing I didn’t do was tell my students. I wasn’t sure how I was going to tell them. The school year was ending, and when I come back in the fall I didn’t want to startle them, but I just-- I wasn’t sure. Well, dying my hair red was the way to tell them and I had no idea until I did it, I went-- I had chemo that morning and then I went into school that afternoon. And a little first grader asked me why I dyed my hair and it was just the perfect segue into telling them. And I had some awesome sit-downs and tears and just told them that that’s what was going to happen and had wonderful dialogues. So that was a worry that just worked itself out and it was just amazing. It was amazing. And even the last day of school before-- I went and I had a haircut. And my hair was not as long as this, but I dyed it red and it was yah, but a couple days later I went and had it cut, and the girl that cuts my hair, she cut it super, super short. And I remember not being happy, and I’ve had very short hair before too. But I remember it was one of the saddest haircuts ever. And the girl that cuts my hair said, “I just think it’s going to be easier for when it falls out if it’s short.” And that haircut was worse than when it did fall out I have to say. That was more emotional and it was really, really just hard at that point.

WhatNext

WhatNext is a patient site that offers breast cancer help for families, and for patients, or the triple negative breast cancer survivors. It’s a great resource. I think it’s awesome that there’s places out there for you newly diagnosed patients to be able to go and find someone who has this similar diagnosis, similar treatment, similar in age. I just, I think that’s incredibly important. I know that’s what I reached for, that’s what I looked for, that’s what I longed to find. I spent a lot of time trying to find people that were receiving the same treatment, because the fear of the unknown that’s what I think was so difficult.

Patient Doctor Relationship

To build a good, working relationship with your oncologist I would recommend being very patient. I sometimes get frustrated, because they don’t run on schedule. A lot of time you’re waiting and you have to wait, but when she does-- when my oncologist would finally get to me she spent-- I never felt like she was rushing. She always apologized for running late, but she never made me feel like she had to-- that we hurried my appointment. She was always very patient, very caring, made me feel very well-taken care of. And that is what you need and that’s what you want, and she continues to make me feel that way.