Everything That I Never Knew I Always Wanted

By:
Maggie Hesse

August 9, 2006, was the absolute best day of my life! My first child, Joshua, was born and I couldn't have been happier. They say that you don't know true love until you have a child of your own. You think you are prepared, but really you're not. It just comes over you like a wave of emotion, and it truly changes who you are. I knew that my life would change after having a child but I never expected to change as a person. I honestly don't remember who I was before Joshua came into my life. And now that he is here, I know why he came into my life. I have always believed that everything happens for a reason; sometimes we know the reason and other times we do not.   

About a month or so before Joshua was born, I was on the August 2006 Expecting Moms message board and I came across a post that piqued my interest. A woman posted a message referencing Inflammatory Breast Cancer (IBC). I had never heard of IBC so I followed the link to a news video. It is a rare form of breast cancer that is very aggressive. The physical symptoms of inflammatory breast cancer are that one breast becomes larger than the other, often suddenly; warmth and swelling of the breast; redness or pinkness that may look like an infection; itching or pain in the breast that won't go away; dimpling of the skin, which may look like the skin of an orange; nipple discharge; nipple retraction or flattening; or the appearance of a bruise on the breast that does not go away.

I was changing my clothes one morning a couple of weeks before Joshua was born and I noticed that my left breast was bright red. My left breast had been getting larger than the right throughout my pregnancy but I assumed it was due to all the hormonal changes. Even after seeing the redness, I more than likely would not have noticed a problem if I had not read the post about IBC. I brought it to my obstetrician's attention at my next appointment and that is where my life as a cancer patient began.

I had a mammogram on Thursday, August 17, 2006 to see the mass better and then an ultrasound-guided biopsy the next day. The whole time I had in my mind that the tumor was benign. No one person had mentioned the possibility of cancer... that is, until I went for the biopsy. I was talking to the radiologist before the biopsy and I asked her what the chances were that the tumor was cancerous. She looked at me and said, "I have to be honest with you. The chances are very great that it is malignant."

I felt like I had just been sucker punched in the gut. I immediately tried to get in touch with my husband, Chad, who had taken Joshua somewhere in the hospital to change and feed him. But Chad's cell phone did not work in the hospital. Then I tried to call my mom but only got her voicemail. When I finally got in touch with my best friend, Barb, I was sobbing uncontrollably. I asked her to keep trying to call Chad and my mom. I wanted so desperately to see Chad and Joshua but the doctor had to start the biopsy, so it was another hour until I saw my family. Chad, who had been told the news during my biopsy, came into the room with Joshua when it was done, and we spoke to the radiologist. My parents were already on their way. After speaking to Barb, they had immediately started the four-hour drive to see me.

 

That weekend went by so slowly. We went to an appointment with a surgeon the next Tuesday, which was supposed to be just a meeting to discuss possible diagnosis scenarios. I wasn't supposed to get the pathology report until the next day. But on the way to the meeting, I knew we would be getting the news that day. When we met with the surgeon, she said the pathology report had just been faxed to her minutes before our arrival. The tumor was malignant. I went from being the happiest wife and new mother to being in the middle of a nightmare. This was the absolute worst day of my life. Chad and I just cried while she told us what this meant and what would happen going forward.

On Tuesday, August 22, 2006, I was diagnosed with locally advanced breast cancer with inflammatory features (stage 3 breast cancer). I had quit my job to be a stay-at-home mom a month before Joshua was born and had been dreaming about what my new daily job would be like. I never imagined that my days would soon be filled with hospitals, medicine, tons of sleep and tons of help at home — and all for me and not the baby. My tumor is the size of a baseball, so it is inoperable. I did get some "good" news; there were no other tumors — the cancer had not spread.

My treatment for breast cancer consists of four doses of Adriamycin and Cytoxan every other week and then a dose of Taxol and Herceptin (my tumor is HER2/neu positive) every week for 12 weeks. After the chemotherapy, I will have a mastectomy followed by radiation treatment. They will remove sentinel lymph nodes during the surgery to see if the cancer has spread to my lymph nodes. If it has, I will receive radiation twice a day for about six weeks. If it has not gone to my nodes, then I will receive radiation once daily for six weeks on my chest wall (because of the inflammatory possibility). I will then get intravenous Herceptin once every three weeks for one year and also take Tamoxifen orally for five years. About one year after the radiation, I will be able to get breast reconstruction surgery.

I pray to God that the treatments will not completely exhaust me, so I can take care of my son as much as possible. My mom, brother, and in-laws have been able to take some time off to stay with us to help take care of Joshua and me for the days following my first treatments. The first combo of chemo drugs with Adriamycin (or the red devil, as some call it) and Cytoxin, is supposed to be more punishing to the body than the second protocol of Taxol and Herceptin. I have had two treatments so far with Adriamycin and Cytoxan and have been pretty tired and nauseous. The second round of chemo was much easier than the first due to tons of antinausea drugs and other medication they have given me. I hope I will be able to tolerate the two remaining rounds of the Adriamycin-Cytoxan regimen like I have these first two.

I began to lose my hair on September 21, so I hacked away at it with scissors and saved the rest for my friend Maureen to shave off at her beauty salon. I thought I would be absolutely devastated at the loss of my hair, but it actually has given me a confidence that I never knew I had. I went to the grocery store with my mom today, and my bald head had its big debut. It actually didn't feel weird at all. I felt like me and not a cancer patient. No one stared, and it was just like a normal day at the store.

 

I am 33 years old, and due to the treatment schedule and medications I won't be able to get pregnant again until I'm about 40. My husband and I have told ourselves that we won't have any more children. I am so grateful for Joshua. He is absolutely perfect! I don't know what I would do without him. I truly believe that he is here to save my life. My husband and I were on the fence for so long about whether or not we wanted to have children. Now I can't even imagine how we thought that we could have gone through life without him. When I found out that I was pregnant, I was so excited. We immediately changed our outlook on life. I went from going back to college for a master's degree to deciding that I would be a stay-at-home mom. For nine months I dreamed about, and stressed about, how my life as a mom would be... I couldn't wait to meet the new little man in our lives. I now believe that God gave me Joshua not only because He knew that we would love him, but to save my life. Not only did the pregnancy bring my breast cancer to my attention, but because of Joshua, I now have something to drive me to full recovery. For me, there is no other choice. This is just a bump in the road as far as I am concerned. Cancer will not beat me.

I believe that everything happens for a reason. I think I have breast cancer so that I can become an advocate for breast cancer awareness. I really hope I am able to touch at least one person in all of this and hopefully save someone like someone saved me. My best friend Barb and I are working to raise funds for a Susan G. Komen Race for the Cure run/walk happening in my hometown of Cleveland.

I never realized that breast cancer is diagnosed so often in pregnant women. I want to tell every woman that even if you are pregnant, the smallest change that you notice in your breasts should be reported to your doctor immediately. My tumor grew so quickly. Do breast self-exams every month! You have to be your own advocate when it comes to your health.

I am grateful to the woman who posted a message about inflammatory breast cancer. Without her, I would still not know that I have cancer. I believe that she has helped save my life. It's amazing how the ripple effect can move and change our lives.

I am remaining positive despite what has been happening in my life. I have kept my sense of humor and I don't take anything for granted. I never knew how many people truly cared about me until August 22, the day of my diagnosis. I love life more than ever and I know that it will only get better from here! I have found strength inside of myself that I never knew existed. I have courage that I wish I had never found in this way, but now I know who I am and who I want to be. And I will fight to have everything that I never knew I always wanted.

Maggie’s Update: Maggie first shared her story in late 2006. Here is her report on her life since then:

20 months later: The journey continues

Here I am, 20 months after my diagnosis and I love my life. My son is the absolute best thing that has ever happened to my husband and me. He is almost 21 months old now and is learning new things on a daily basis. My husband and I have a very strong relationship; a much stronger bond than before breast cancer. I have a new lease on life. I stop to smell the roses, or the hyacinths or whatever other flower I may see. I have come out on the other side of treatment a different person but I believe that all of the changes are for the better. I try to live life for what is happening now and not focus on the mistakes or bad memories of the past or look too far into the future. You really have to be aware of your surroundings and what is going on around you to live in the present.

Chemo, mastectomy, radiation

I went through chemotherapy without too many huge issues. I lost all of my beautiful curly hair. I was sick after my first treatment but then was given drugs to combat the side effects of chemo. I did have a reaction to Taxol where my throat began to close in. I really thought that I was going to die. I sat there watching my husband and son and all I could think was, “Do they know how much I love them?” After the reaction, I was given another drug called Abraxane. There were no other big issues after that. I did lose a few of my toenails (I know it sounds painful but it’s not; it’s just really gross) and began to retain a ton of fluid in my legs. I gained 20 pounds during chemotherapy, partly from steroids and partly because I ate what I wanted, when I wanted. I was tired most of the time. My husband and I hired a nanny to help take care of Joshua so I could sleep and he could go to work. Friends and family came to treatments with me. I don’t remember much of the treatments because I was given a lot of Ativan to calm my nerves. Chemotherapy was much easier on me than I thought it would be. I imagined myself hanging over a toilet most of the time. But it wasn’t like that at all. Fatigue was my biggest issue. I learned very quickly to do things that I enjoyed most and put off things like cleaning and doing laundry. Once you use your energy, it is very hard to bounce back.

 

I finished chemo on January 19, 2007. Before my mastectomy, we had a “Bye to Maggie’s Bum-Breast Party” to celebrate the cutting out of the cancer. My husband bought me a cake that read, “So Long and Thanks for the Mammories” in pink. I figure that if you can’t have a sense of humor about it then you might as well just curl up in a corner and let it beat you. I had a left modified radical mastectomy on March 2, 2007. That was really the easiest part of my journey. I was able to pick up my son after 10 days. I wasn’t really in much pain but didn’t have much mobility due to removing lymph nodes. It was strange to only have one breast. I hated that I had to wear a prosthesis every time I left the house. I was big busted so it was obvious that something was missing if I didn’t wear it. I was okay with being bald and going without anything on my head but only being one-breasted was too weird for me in public. I didn’t realize how lopsided I would feel. I got back to my normal arm mobility after about 3 months. I stuck to my exercises to make sure that I didn’t lose any of my range of motion.

I was tattooed with markers for radiation treatment on April 4, 2007. They are just these small blue dots. I also had a dry-run for radiation to make sure that I was set-up correctly for the radiation. I began radiation on April 9, 2007. I had it every day for 6 weeks. I had a standing appointment at 6:45 a.m. I went that early so that my husband could stay home with our son until I got home and then go on to work and not be too late. It was a real pain in the butt to go every single day but it wasn’t too bad. You really get to know the techs that are working the machine and you meet new friends as they are all there at the same time each day, too. I have inflammatory breast cancer, which means there is cancer in the skin of the breast, so they really had to radiate me. I did have third-degree burns at the end of radiation. It was so painful and I was miserable for about 4 weeks after radiation. Most women I know did not have this experience. I, again, was lucky.

Now what?

Soon after radiation was over, I experienced something for which I was not at all ready. I began to feel as if I was all alone. So many people had come out of the woodwork to help and support my family and me. I had letters, cards, small gifts and so many prayers on a daily basis. Friends that I had not spoken to since high school were calling and emailing. It really felt wonderful. But, then after treatment was over, it was almost as if I had never had cancer. Many people acted as if my life was back to normal. I, on the other hand, felt as if I had just begun to deal with what had happened to me. Through all of the treatment I was just kind of going through the motions. I was told I had to do chemo, surgery, radiation, and medications so that is what I did. Now, I was on my own in a way. I wasn’t going to the hospital that I had grown accustomed to going to every day or at least once per week. I had grown to love many of the nurses and the various people who were helping in my care. I also had someone to help me or spend time with me every week. Now, I was left to begin a new stage of my journey- the after breast cancer treatment phase. It really hit me hard. I was pretty down. I had so much time to think about what had happened to me and all I could think was, “Oh my God! I had cancer!”

 

I began trying to find my new normal (that is what everyone calls it). I was slowly beginning to gain my strength back. I still had a few residual problems from chemo. I was taking pain medication for pain in my legs and I began taking medication for Restless Legs Syndrome and neuropathy in my legs, all due to having gone through chemotherapy. I felt as if I was standing alone and wanting to shout that I needed someone to show me the way. How was I going to do this on my own? I decided that it was time to jump into my new normal head first. I wanted my son, Joshua, to begin to know what it was like to be a child with a “normal” mom. It was time to begin my new career as a stay-at-home mom. So, we enrolled in toddler classes with other kids his age where he could be a normal toddler. It was nice for me too, because I was able to finally get out of the house and do the things that I had imagined I would be doing with Joshua when I was pregnant. It was finally my time to do what I wanted to do instead of what others thought I should be doing.

Being a survivor

Living as a breast cancer survivor is something that I never thought I would be doing. Breast cancer has changed my life in ways that really suck but also has made a positive impact as well. I have friends now that I can’t imagine my life without and if it weren’t for breast cancer, I never would have met them. I now watch Ellen instead of Oprah because although I love Oprah, her show is so serious most of the time and Ellen really makes me laugh. I wake up and feel grateful for most everything around me. There was a time in the beginning of all of this that I thought that I would be dying soon. Now when I am frustrated that my son has just thrown his lunch on the floor, I still can smile because at least I am here to see it. I gained 40 pounds in all over the course of the last 20 months not only because of the steroids during chemo but because who was going to tell the cancer patient that she couldn’t have a brownie (or two) with 2 scoops of ice cream for dessert every night? Now I am just beginning to lose weight and eat healthier. I try to buy as much organic food as I can. I don’t obsess about it but I do buy things like eggs, meat, fruits and vegetables from the organic sections of my local grocery store.

Some of the biggest changes in me are that I ask more for what I want. I question my doctors and tell them what I need. I say no to more things instead of always saying yes because I don’t want to make anyone upset. I choose what is more important and turn down things that are not as deserving of my time. I try to spend more time with my husband and my son. I try to tell those that I love something that I love about them each time that I see them so that they will always know how much I care.

 

I think that I was a good person before breast cancer but now I think that I am bound for greatness. I want to do something with my life that involves breast cancer survivors. If I can help even just one person out of this, then that is what I want to do. For now, I am the community leader for the Breast Cancer Support Message Board and the Cancer: Friends and Family Support Message Board on iVillage. I love being able to ease the minds of people who are newly diagnosed. I also love that I can use my experience of facing my own mortality to help those who have a loved one who has been diagnosed with cancer. I try to post every day if I can. I love to research so if I don’t already know the answer to the question of a poster, then I will find it. I pride myself in staying up-to-date on breast cancer news and I also try to learn as much as I can about other cancers affecting us.

My maternal grandmother was recently diagnosed with primary peritoneal cavity carcinoma (a mouthful I know) which is very closely related to ovarian cancer but just at a more advanced stage. She was told that she is no longer a candidate for chemotherapy as the side effects are doing more damage to her quality of life than the chemo is doing to destroy the cancer. I now am even more motivated to do something to educate women on all cancers that afflict us. Ovarian cancer is a silent killer because there are not standardized tests given to screen for it. Once signs or symptoms occur, in many cases the cancer has already spread to the abdominal cavity and to other organs. Her diagnosis also has made me more aware of my own reproductive health. I can’t stress this enough- we all have to be advocates for our own health. It is so important. No one knows your body like you do.

Anyway, I think I am going to call my Grandma and tell her that I love the way that she holds my hands when my hands are cold because hers are always warm. I also think I am going to tell my husband that I am so grateful for how he always has a way of making me laugh. I still don’t know everything that I never knew that I always wanted but I am getting pretty darn close.

Editor's Note: While the awareness of breast cancer has been raised significantly in the past 15 years, inflammatory breast cancer (IBC) and its enigmatic symptoms remain relatively unknown to women and often their healthcare professionals. According to the National Cancer Institute, IBC accounts for 1 to 5 percent of all breast cancer cases in the United States. It is an especially aggressive form of breast cancer and tends to be diagnosed in younger women, compared to non-IBC breast cancer. IBC does not always produce a mass or tumor, so often the initial symptoms, which develop quickly, usually over a period of weeks or a few months, are mistaken for signs of a breast infection (mastitis) or injury. Many women are given antibiotics to treat the supposed infection first, all the while delaying crucial treatment of this fast-growing cancer. (Read more about inflammatory breast cancer from the National Cancer Institute.)

Breast cancer is the second-leading cause of cancer-related death in women. The American Cancer Society estimates that 182,460 women will be diagnosed with and 40,480 women will die of cancer of the breast in 2008. One in every 3,000 pregnant women is diagnosed with breast cancer, according to the National Cancer Institute. (Read more about breast cancer and pregnancy from the National Cancer Institute.)

Many thanks to Maggie for sharing her story with us during this difficult and busy time in her life. Her openness and positive attitude is inspiring. We hope Maggie's story will help raise awareness about this lesser-known but very aggressive form of breast cancer.