This is the blog post I have not been able to write since I was diagnosed with ovarian cancer. A big thank you to my editor at spryliving.com for asking me to share my personal journey with ovarian cancer. Below is a link to my story:
My Journey With Ovarian Cancer: One Woman's Heart-Wrenching Story
Chemo starts today.
I had to come to St. Louis Wednesday instead of Thursday because they changed my appointment time to have my chemo port installed. I’m staying at Hope Lodge, which is run by the American Cancer Society. I don’t have a lot of good things to say about the American Cancer Society. If I had breast cancer or cervical cancer, I would be able to get all kinds of help from them. Given that I have ovarian cancer and endometrial cancer, sorry Charlie. I did get a swag bag, however, when I checked in.
Reality is finally setting it. Tuesday night I called my hair stylist to see if I could get a pre-chemo haircut. My regular stylist was out with a bad back so his wife cut it. It’s a very short buzz cut. A friend commented I now have a G.I. Jane haircut. My regular stylist’s parents worked with women with breast cancer going through chemo who had lost their hair. They understand.
She was wonderful. She fit me in at the end of the day and it was just her and I in the shop. I never thought I was attached to my hair until she started cutting and pieces started falling on the floor. She kept commenting that I have a nice head shape. I’ve always been a quick shampoo and out the door girl. I don’t own a blow dryer, styling tools or hair products. Losing my hair is one of the hardest things I’ve ever done. There were a lot of tears and hugs that night.
My hair was already super short. I knew the chemo drugs were going to cause my hair to release so I chose to get the pre-chemo cut to have less to lose because I thought it would make the eventual hair loss easier. I didn’t realize how hard this first hair cut was going to be. It’s not so much the hair as what it represents – the end of my old life and the beginning of my new life with cancer. I found myself running my fingers through my hair and catching glimpses of myself in mirrors.
It’s hard to believe in the past I had thought about shaving my head on several occasions. Now that I am going to go bald, I want my hair back. It’s part of me. I want my old life back. I am so jealous of women with hair. Right now I don’t have any control over me anymore. My body is no longer mine. It’s an alien object.
When I looked in the mirror afterwards, I saw a stranger. It wasn’t me but it is me. I feel like a freak show and that everyone is looking at me. Losing my hair is one of many badges of courage I am earning in this fight. God there are days I wish it didn’t have to be me. Walking out of her shop that night was the hardest thing I’ve ever done.
I still look in the mirror and expect to see me with hair. Seeing me like this is a shock. I keep rubbing my hands over what’s left and my head feels like a brillo pad. And I really really really miss my hair. Even what little I have will be gone within the next two weeks.
Every day is a reminder that I have 18 long hard weeks ahead of me. I am losing pieces of myself and I don’t have a say in it. First I lose my reproductive organs; now I have to lose my hair. What more do I have to lose?
I don’t know what I was expecting when I heard I had cancer. Intellectually, I knew what I was dealing with. At the deep down emotional gut level where it really counts, I had no idea. I’ve been on an emotional roller coaster since my diagnosis. Thank God I found out one of my many scripts is for Atavan. I never needed mother’s little helper until now.
I don’t know where I’m going to come out on this journey. Everyone tells me to think positive. I’m a realist. No one knows what is going to happen. I just have to deal with it one minute at a time and give myself permission to have what one friend calls the “screaming woo-hoos”.
Battling cancer takes courage. This fight is not for the faint hearted. There are days I am beginning to wonder if I can do this.
“The time has come,” the walrus said, “to talk of many things: Of shoes and ships – and sealing wax – of cabbages and kings”
― Lewis Carroll, Alice’s Adventures in Wonderland & Through the Looking-Glass
It’s 4 a.m. on Mother’s Day and I am finally having my breakdown. Three weeks ago I went in for a da Vinci radical hysterectomy with bilateral salpingo-oophorectomy. I ended up having a diagnostic laparoscopy, exploratory laparotomy, total abdominal hysterectomy with bilateral salpingo-oophorectomy, bilateral pelvic and periaortic lymph node dissection, omentectomy, peritoneal biopsy and appendectomy when my gynecological oncologist found a large malignant mass on each ovary.
I am so angry right now. This should not be happening to me. My freelance writing business was finally starting to take off and I had so many plans this year. I was going to Ireland and Scotland for a month. Now I am reeling from not only a diagnosis of early-stage endometrial cancer but stage 1c ovarian cancer and getting ready to start chemotherapy. If my gynecologist had listened to me in 2008 and did the hysterectomy then I would not be going through this now.
It’s taken three weeks for me to wrap my head around this and I am still an emotional wreck. My brain has refused to process this information. I was mentally prepared for endometrial cancer. I had done my research. I knew everything there was to know about endometrial cancer. I knew nothing about ovarian cancer. No one expected this. My surgeon did not expect to find this. It was a shock to wake up in recovery with 25 staples in my belly.
I’m terrified. No woman wants to hear she has ovarian cancer. No woman should have to hear she has ovarian cancer. I’ve been trying to put on a brave face and making jokes but the reality of the diagnosis hit home when I met with my doctor Friday to go over the pathology report and discuss my treatment options.
According to my pathology report, I had synchronous primary tumors on my right and left ovaries. The tumor on my right ovary had seromucinous and clear cell histopathologic features and the tumor on my left ovary had seromucinous histopathologic features. What this means is while my cancer was caught early, it is more difficult to treat and less responsive to chemotherapy. My doctor placed me in the 50 percent or greater group of women who survive.
I start chemo next week. I have six sessions, one every three weeks. I will have infusions of Taxol and Carbo. I’m not ready for this. I am never sick. I don’t even have a primary care physician. Since 2008, when this nightmare started, I’ve only been to the doctor twice – once for a broken finger and once when I got hit by lightning. I survive being hit by lightning only to be taken out by cancer.
I’m not ready to die yet. There is still so much I want to do. I need to finish writing my book. Dying is all I can think about. Thank God for my friends. They have talked me down off the ledge more times than I can count the past three weeks. No woman should go through this alone. I don’t get along well with women. My best friends are guys. But I have discovered such a great sisterhood of women out there since my diagnosis who have been supportive and loving. Women need each other at times like this and I am so grateful for the women in my life right now.
I have stepped off the edge of the world where there be monsters. I must take up my sword and shield and prepare to do battle.
I have ovarian cancer.
Why am I an advocate for educating women about endometrial cancer?
Today I found out a friend of mine has had a recurrence. This is not the news you want to hear one week before your own endometrial cancer surgery. My heart is breaking tonight. No woman should hear she has endometrial cancer. Not once. Not twice. Not three times.
The big three – breast, cervical and ovarian – get all the news play. No one knows about endometrial cancer except those of us who are living with it now. And I am so angry she is going through this again. I am so angry I am going through it. I am so angry that any woman has to go through this.
Endometrial cancer is not the bastard cancer stepchild. It is very very real. Everyone tells me I have such a positive outlook but no one knows how many times I cry in private. If a recurrence can happen to my friend, it can happen to me, to everyone who has this damnable cancer.
I call getting cancer a blessing. And, in an odd way, it is. Whatever it takes, I will get the word out and reach out to women. Cancer is such a scary word. Having cancer scares me. There are no guarantees in this world. From the minute you are born, the warranty on your life begins to expire.
I don’t want cancer to take me out. I always imagined myself dying doing something like climbing Mt. Everest. Taking on cancer is a fight one doesn’t always win. My friend is a fighter. This is her third go round with cancer. She and I will do battle together.
So much more needs to be done. Women need to stand up, educate themselves and demand something be done. Recently, a doctor gave a talk for Girls Night Out at one of our local hospitals about cervical cancer and ovarian cancer. I wanted to go to stand up and ask why he wasn’t talking about endometrial cancer. Unfortunately, I had other commitments.
No more. I am speaking out. I am yelling out about this cancer. Women join me, join your voices, in this fight. Endometrial cancer is the most commonly diagnosed gynecological cancer. Support organizations like Peach Outreach and Womb Cancer Support UK. Talk to your gynecologist.
No one asks to get cancer. You can either bury your head in the sand or you can stand up and be counted and demand money and research and time be devoted to fighting it so another woman doesn’t have to hear this diagnosis.
I applaud the work Washington University School of Medicine and M. D. Anderson Cancer Center are doing. These institutions are doing the cutting edge research into endometrial cancer. We need answers. We need a cure.
Learn the risk factors. Learn the facts. Become accountable to your own body. We only have one body. Recognize the symptoms and seek treatment.
Risk Factors
The following risk factors predispose women to developing endometrial cancer:
Endometrial hyperplasia
Obesity
Never having children
Early onset of menstruation before age 12
Delayed onset of menopause after age 55
Taking tamoxifen
Taking estrogen without progesterone
Radiation therapy to the pelvis
Family history
Lynch syndrome
Symptoms
Abnormal vaginal bleeding, spotting or discharge
Pain or difficulty when urinating
Pain during sexual intercourse
Pain in the pelvic area
If you experience any of these symptoms, tell your doctor immediately.
If you don’t take care of yourself, who will?
Resources
http://peachoutreach.com//
http://wombcancersupportuk.wix.com/home
Join the fight.
I am sitting in my bathroom reading “Why I Wore Lipstick to My Mastectomy” by Geralyn Lucas when I start crying. I lean my head against the cool plaster wall and sob. It has been slightly over a week since I was officially diagnosed with endometrial cancer and this is only the second time I have cried.
I wipe and see blood. The blood is a reminder of the tumor growing inside my uterus. It is a reminder of all I am about to lose. When I was young, I wanted to have 18 children, enough to form two baseball teams. Now it is too late.
I am crying for the children that I never had. I am crying for the more than 8,000 women who will die from endometrial cancer this year. I am crying for the 50,000 women who will be newly diagnosed with endometrial cancer this year. I am crying for those who have already lost their lives to endometrial cancer.
When the realization hits me…I have become a 2014 statistic. I am one of the 50,000. I have endometrial cancer. Forty-nine thousand other women will hear that diagnosis this year and that is one too many.
When I was 12 or 13, I looked forward to getting my first period. I would check my panties several times a day looking for the telltale signs that I had started. Now I dread seeing blood.
There are times when I pound my pelvic area with my fist and yell “I hate you.” And there are days when I miss my uterus. To tell the truth, until I was diagnosed with cancer, I never thought about my uterus. Now it is constantly on my mind.
One day a young woman who lives in my building struck up a conversation with me. She asked what I did for a living. I told her I was a freelance writer and she asked what I was working on. I told her I was writing a story about endometrial cancer. She stared at me and asked what that was. I said uterine cancer. She then asked me what a uterus was.
I just stared at her. How could she not know what a uterus was? I asked her if she had ever been to a gynecologist. She had, several times. I asked her if her gynecologist had ever explained this to her. She said she knew what the word was but she couldn’t visualize it because she couldn’t see it, couldn’t touch it. I had to show her where her uterus was located.
I knew I was in trouble when I had to explain menstruation to her. When I told her the ovaries produced eggs, she just laughed at me. She asked me what eggs were. She said all she could envision were chicken eggs. All I could do was shake my head. I did not even try to explain endometrial cancer to her.
The following information comes from the National Cancer Institute website, which has an excellent online booklet titled “What You Need To Know About Cancer of the Uterus.” For more information, visit their website at: http://www.cancer.gov/cancertopics/wyntk/uterus.
Endometrial Cancer
The uterus is a hollow, pear-shaped organ located in the pelvis. It has two layers of tissue: the inner layer, which is called the endometrium, and the outer layer, which is called the myometrium. Most endometrial cancers form in the endometrium and are the most commonly diagnosed gynecological cancers. The most common endometrial cancers are adenocarcinomas, which begin in the cells that make and release mucus and other fluids. Cells are the building blocks that make up tissues. When normal cells die, new cells take their place. Sometimes this process goes wrong and cells don’t die like they should. The buildup of extra cells often becomes a mass of tissue called a tumor.
Endometrium
Endometrial Adenocarcinoma
Risk Factors
The following risk factors predispose women to developing endometrial cancer:
Endometrial hyperplasia
Obesity
Never having children
Early onset of menstruation before age 12
Delayed onset of menopause after age 55
Taking tamoxifen
Taking estrogen without progesterone
Radiation therapy to the pelvis
Family history
Lynch syndrome
Not all women with these risk factors will develop endometrial cancer. Some women who are diagnosed with endometrial cancer will not have any of these risk factors.
Symptoms
Abnormal vaginal bleeding, spotting or discharge
Pain or difficulty when urinating
Pain during sexual intercourse
Pain in the pelvic area
If you experience any of these symptoms, tell your doctor immediately.
Doctors don’t know why some women develop endometrial cancer and others don’t. There is still more research that needs done. The Siteman Cancer Center and Washington University School of Medicine in St. Louis and M. D. Anderson Cancer Center in Houston received Specialized Program of Research Excellence (SPORE) grants from the National Cancer Institute to study endometrial cancer. To learn more, go to http://www.siteman.wustl.edu/ContentPage.aspx?id=5485 or http://www.mdanderson.org/education-and-research/research-at-md-anderson/early-detection-and-treatment/research-programs/spores/uterine-cancer-spore/research/index.html.
I did not want to be a member of the cancer club but in some ways having cancer is a gift. I am coming to believe that things do happen for a reason. Women are starting to have a long-overdue conversation about endometrial cancer.
Marcy Kurtz is the founder and director of Peach Outreach, a 501(c)(3) corporation committed to raising awareness about endometrial cancer and other gynecological cancers and funds to support research and education to advance early diagnosis, treatment and the quality of life of endometrial cancer and other gynecological cancer patients, survivors and their families. Peach is the new pink. Visit their website at http://peachoutreach.com/ to learn more.
There are only so many colors that can be turned into ribbons. There are only so many months that can be designated cancer awareness months.
In less than a month, I am having a hysterectomy. I see the tumor as a metaphor for the child I never had. I would like some small reminder to remember my uterus by. Perhaps after my surgery and my recovery, I will get a tattoo to remind myself of not what I have lost but what I have learned along the journey.
I will write more later. Right now, I wanted to share a link to an article I wrote on endometrial cancer. The article is now live on spryliving.com. Here is the link: http://spryliving.com/articles/the-obesity-endometrial-cancer-connection/.
Some have taken issue with the focus on obesity in this story. Obesity is but one risk factor for developing endometrial cancer. However, recent research at M. D. Anderson Cancer Center in Houston shows that fat women have a nine to 10 percent lifetime risk of developing endometrial cancer, unlike their leaner counterparts who have a three percent lifetime risk of developing endometrial cancer. Epidemiologic studies show obesity is strongly correlated with an increased risk of developing endometrial cancer. Literature reviews conducted by the American Institute for Cancer Research and World Cancer Research Fund confirm the evidence linking body mass index and cancer is strongest for endometrial cancer. Adipose (fat) tissue stimulates the excess production of estrogen and researchers believe this is a major risk factor for developing endometrial cancer.
The causes of endometrial cancer are still unknown. Young or old, lean or fat, women are at risk. Women need to understand the risks and need to take steps to minimize their risk of developing endometrial cancer. If losing weight and making lifestyle changes can save your life, don’t you owe it to yourself to make changes in your life. Otherwise, the cancer club can always use another member to replace one of the more than 8,000 women who will die from endometrial cancer this year. The choice is yours.
I am overweight. MY body mass index, or BMI, places me in the morbidly obese category. I wasn’t always heavy. I started piling on the pounds after I broke up with my first fiancé. What is surprising is that I do triathlons, I lift weights, I hike, I go caving, I backpack, I kayak. To look at me, you would not guess I weighed 242 pounds. I don’t want to go into surgery this heavy so I have joined Gold’s Gym. This was my wakeup call that my weight has spiraled out of control.
I only have myself to blame for my weight issues. I am responsible for what I put in my mouth and the quantity of food that I eat. What it comes down to for me is mindless eating. I am not an emotional eater. When I am angry, sad, lonely, I work out. When my parents had cancer, I would go to the pool and swim laps and take my frustrations out that way. Women who are fat have only themselves to blame. We make our own decisions. We victimize ourselves. Obesity is on the rise in this country and women don’t realize its dangers. Call it harsh. Call it blaming the victim. Nobody put a gun to my head and told me to take another bite; I made my own choices.
Yes. Making lifestyle changes is not easy. Choosing to eat healthy vs. choosing to eat junk food. Choosing to exercise vs. sitting on the couch and watching TV. But when it boils down to my life or enjoying another bite of chocolate, I’ll choose my life any day.
Please feel free to comment and share your stories. This blog is an open forum for all women dealing with endometrial cancer and men who have someone in their life who has been touched with endometrial cancer.
According to my endometrial biopsy pathology report, I have an endometrioid adenocarcinoma, grade 1, with villoglandular morphology tumor. This is the most commonly diagnosed endometrial cancer.
There is not much I can control right now. What I can control is how I look and feel going into surgery, which is in five weeks. I am tired of being fat. At my last doctor’s appointment, I weighed 241 pounds and my blood pressure was 150 over 110. I want to look and feel healthier before my surgery. I just came in from a ½ mile run/walk. It’s not much, but it’s a start.
It is time to make changes in my life.
The first word someone would use to describe me would be strong. When I began telling people I had endometrial cancer, the first thing they would say is “You’re strong. You’ll make it through this.” No one said “I’m sorry.” No one asked if I needed help. No one asked how I was coping. The unspoken assumption was that I was going to get through this and everything was going to be alright.
Surprise. I’m not strong. I can’t do this by myself. I’m scared and I want my mommy. I want someone to hold me and tell me everything is going to be alright. On those nights when I can sleep, I cuddle my 50-year-old teddy bear to my chest. I want to cry but feel as if I’m not allowed because I’m “strong.”
I am going through this alone. I have been estranged from my family since 2009. I don’t have a spouse, a significant other or a lover to share my fears with. I remember when my mom and dad were both diagnosed with cancer. The entire family rallied around them. I wish I had that closeness, but my family made unfortunate decisions that led to a rupturing of family ties that can never be repaired. This fight I fight alone.
My total hysterectomy is scheduled for April 18. No one will be there, partly because I have asked friends not to come. My gynecologist oncologist is performing minimally invasive surgery using the da Vinci robotic surgical system. With luck, I’ll be discharged the next day. My family won’t be there. I don’t want to be a bother to anyone. Remember. I have my “strong” image to live up to. A strong woman handles endometrial cancer alone.
I have so much on my plate right now. I own my own freelance writing business, Codemo Writing Services. I have been unable to work. I have lost clients. I am barely making it right now. I can’t look for new clients because dealing with cancer takes time away that I can devote to cultivating new clients. Not only am I dealing with cancer, I am worried about how I am going to pay my rent, keep my lights on, keep my internet connected, keep my phone service turned on, feed my cat. My electricity is being disconnected March 21 because I can’t pay the charges. I have no one to bail me out.
I had a wonderful support group who rallied around me but I’ve heard from no one since I dropped my bombshell. I wish someone would pick up their phone and call me just to see how I’m doing. I know everyone has busy lives but is it so difficult to pick up the phone and make a call. What I hear from my support group is I’m strong and I will make it through this. I hate the word strong.
I don’t own a car and my doctor is located two hours away in St. Louis. I take Amtrak to my doctor appointments. I have to have a colonoscopy on April 10, a week before my surgery. Because it is scheduled before the first Amtrak train leaves Springfield that morning, I’ve had to make arrangements for lodging the night before. After my colonoscopy and my pre-surgery workup, I walk two blocks to the MetroLink station and take Amtrak home.
I have to go down the night before my surgery, which is scheduled for 7:30 a.m. I have to be there at 5:30. Again, I’ve had to arrange for lodging the night before. I will walk two blocks to the MetroLink station and take Amtrak home the next day. There will be no one at home to take care of me post-surgery.
Am I feeling sorry for myself? Probably. I’m entitled. I have cancer damn it.
I can do this because I’m strong. It’s how I’ve always handled the curve balls life has thrown at me – alone. Being alone has been a conscious choice on my part. I’ve pushed people away. I’ve prided myself on the fact that I have never needed anyone because I’m strong. You know what. I’m not and I do.
This morning I went to work at the University of Illinois Survey Research Office, where I work part-time as a researcher. I had been anxiously awaiting the news of my endometrial biopsy results from last Tuesday. I had called this morning and left a message for my doctor’s nurse asking if the pathology report was in.
At around 9:30 this morning, just as I got a caller on the phone and was reading the spiel from our latest survey, my cell phone rang. It was my gynecologic oncologist.
The cancer club has a new member. The pathology report showed a clearly differentiated Stage 1 tumor in my uterus. If I hadn’t already been sitting down in the hallway outside the Survey Research Office, I would have collapsed.
I later asked a nurse friend what this meant. She said a clearly differentiated mass means it is a mass with its own boundaries as opposed to an undifferentiated mass that is integrated with the surrounding tissue. The type of cells they recovered from the biopsy let the pathologist know what type of tumor they are dealing with. She added clearly differentiated is always better than the other one and it is easier to surgically remove the entire growth.
As it was, my sobs were loud enough to attract the attention of several women in nearby offices. I have been prepared for this news since 2008. You are never prepared for a cancer diagnosis. My reproductive organs have turned on me and declared war. I just want them out.
I was scheduled for a follow-up appointment next week. Now I am preparing for a hysterectomy. My gynecologic oncologist said he almost called this weekend but waited until today. He asked if I was alone and I told him I was at work. I don’t imagine it gets any easier calling and telling women every day that they have cancer.
When he told me, I said I had been expecting the news. He asked why. I said women know these things. I knew something hadn’t been right in my body for a long time. I said ever since my diagnosis of complex hyperplasia without atypia in 2008 I knew I was living with a ticking time bomb inside me that was going to go off one day. When I started bleeding a year ago, I knew that was a danger sign. I said all the research I did for my article pointed to cancer.
That is one diagnosis you never want to hear, however.
The director of the Survey Research Office was wonderful. She opened her office and let me talk and later let me have a private office where I could sit and make phone calls. She also told me to go home and to take as much time off as I needed and that I would always have a job. Another woman from the office across the hall brought me a cup of water. She had been on her way to the restroom when she heard the news.
Everyone has gone out of their way today. I appreciate all the little kindnesses. However, as someone messaged me, don’t let the word cancer define you. I am still Roberta; I am not the cancer. This isn’t going to change.
I have a consult scheduled with my gynecologic oncologist Wednesday afternoon to discuss my options. Oncologist is such an ugly word; it sounds so harsh. The word does not roll off the tongue easily. He told me to call him anytime between now and then if I have questions or if I need to talk.
I have been so busy today calling friends and family members and telling them the news I haven’t had time to process the news. There are no protocols for telling people you have cancer. I have been telling people this for some time. It is a feeling I have always had. Now I have an official diagnosis. I am from the tell it straight up school. There is no way to sugar coat the word cancer.
I need to make time for myself. I need to lose weight. I have set myself up with regular dates with a speculum. For someone who never wanted to make pelvic exams a regular part of her life, I’m making up for it now.
I will know more after Wednesday. I need to settle myself and say goodbye to my girlie parts. I will miss my uterus, my cervix, my ovaries, my fallopian tubes. They define my gender. They have served me well the past 50 years. I will miss them.
Will their loss make me less a woman?
This news couldn’t have come at a worst time. I don’t think there is a good time to hear the words, “You have cancer.” I have four articles due this week. I have told my editors, who have been very understanding and offered to help in any way they can. I have to accept the fact that my life is outside my control at the moment and trust my doctor.
No one asks to be a member of this club. It’s going to be a bumpy ride.
Endometrial Cancer: Farewell To My Uterus 