What I Can Control

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.

I Have Endometrial Cancer

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.

Me and Martin McCormack from Switchback

Switchback

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.

Waiting

Waiting.

I spent two days cramping and bleeding, which is unusual after an endometrial biopsy. You normally spot for about a day and you’re done.

I do not wait well.

I’ve always been impatient, wanting things done according to my schedule. This situation is beyond my control and I don’t like it. It is three days post-endometrial biopsy and I want to know the results now so I can prepare for what lies ahead.

My gynecologic oncologist said it should take four to five days to get the pathology report. Today is Friday. I should know something Monday or Tuesday, if I’m lucky, since doctors don’t work on weekends.

I am a writer on deadline. I have four writing projects due next week. I haven’t been able to focus. I still need to schedule interviews. I’ve spent the past three days snacking mindlessly on Baked Lays potato chips, Brachs chocolate stars and mini KitKats and playing endless rounds of online Scrabble.

Today, however, I felt the first glimmerings of life coming back. I laughed today. I went to the bank and my favorite teller said to have a great weekend and he’d see me next time, his new catch phrase in place of “Have a nice day.” I looked at him and said he had it up until he said “Have a great weekend.” He created a new catch phrase just for me, “Have an intellectual weekend.” I put my head down on the counter and laughed till I cried. It felt so damn good to laugh.

I have spent the day laughing. My cocoon of numbness is wearing off. Whatever is going to happen is going to happen. I have no control over the situation. It doesn’t make waiting easier, perhaps a shade more tolerable. I don’t like not being in control.

The other night a Facebook friend and I started chatting online. What follows is a portion of that conversation:

“And so it begins. You tell someone you had a biopsy and immediately they tell you everything is going to be alright without knowing the circumstances or reasons behind the biopsy. Or they start telling you stories about friends or family members who had cancer and beat it when the cancer has no relationship to yours. Or, if you’re a woman, they automatically assume you had a breast biopsy and when you say endometrial they look at you like you’re from another planet. Or your own mother doesn’t want to acknowledge the fact you might have cancer. Or idiots insist on babbling that most banal of all phrases at you: “Have a nice day.” There’s no excuse for the idiots. I look them right in the eye and say I’ve had an endometrial biopsy and might have cancer. This is going to be a rough few days. I want to hit someone. I wish I had a suite of armor so I could bash the hell out of someone with live steel.

MMJ: I appreciate your feelings. Pity there isn’t a gun range close to you. Firing a few rounds might make you feel better for a moment. Hang in there.

This time around folks it could be cancer. The number one symptom of endometrial cancer is abnormal uterine bleeding, which I’ve had for about a year. It has progressed from occasional spotting to bleeding up to six times a month, sometimes heavy enough that I have to wear a pad. I don’t have any delusions about this. I went through menopause in 2005 or 2006. I shouldn’t be bleeding.

MMJ: You’ve done the right thing in having the biopsy done. The wait will make you crazy. When you get the results, you can make your plans on what to do next. Cancer or no, something is wrong and needs to be fixed. Hang in there. Do you have access to any violent video games? You can kill a lot and not end up in court.

What has helped is starting a blog and writing about the experience. Isn’t that what writers do best?

MMJ: You have it right. Talking about it is the best therapy. Unfortunately it is difficult for most people facing a possible cancer diagnosis to find someone to listen. It brings up mortality and that is something most humans hide from. I’m proud of you for doing the blog. It is helping you and may even help another woman.

I was inspired to start the blog after interviewing people for my article on endometrial cancer for spryliving.com. Doctors don’t tell women being obese puts them at increased risk of developing it. It is the most commonly diagnosed gynecological cancer. Women need to know this.

MMJ: Keep writing as you go. This would make a great book in the nonfiction section. Your story and experiences could be a great help for women facing this. It will help give you purpose when all this feels so completely insane and out of your control.

It already feels insane and out of my control. Fortunately, there have been a few, such as yourself, who have reached out and are trying to keep my centered. Trying to work is a nightmare. I have no concentration right now.

MMJ: It is insane and beyond your control right now. All you can do is hang onto yourself, the being that is Roberta. That’s about all any woman can do at this point. Concentration will return when the coast is clear.

The writing assignments I have seem so banal compared to what I’m going through. I went through this in 2008 when I found out I had pre-cancerous cells growing in the lining of my uterus. Why is it so hard this time?

MMJ: It’s harder because it is more serious this time.

I do standup and I’m thinking of turning this into a comedy routine. As a survivor told me, you can either curl up in a corner and suck your thumb or you can laugh about it. I don’t think I’m quite at the laughing part yet.

MMJ: You’re right about it not being funny right now. However, it will make a great comedy routine. Another way to get the message out. People are more willing to hear things like this if you can make it OK for them to laugh at it. The monster loses it power if you laugh.

If I can joke about being strip searched on stage in front of the daughter of the judge who put me in jail, I can joke about baring it all literally. Later though. I need to get through the waiting part first. It’s funny. I don’t seem to be able to come up with questions to ask my doc, whom I want by my side through this ordeal. He’s only a few years older than I am. It feels as if I know everything already. I interviewed him for the story.

I keep flashing back to that last photo in my post. That container holds my future. I don’t think anything prepares you for a cancer diagnosis. My parents both had cancer and are 10 plus years cancer survivors. It’s different when it’s happening to you.

MMJ: That’s great that you got to develop a relationship with him prior to the procedure. So often, women only see the doctor at the time of the procedure. By interviewing him, he got to see you as a human being, not just a vagina in need of medical attention.”

Thanks MMJ. That conversation was very cathartic and just what I needed that night. It felt so good sharing my feelings with someone who took the time to listen.

I just need to make it through this weekend.

The Waiting Game

What I remember most about today, in no particular order, and random musings:

The stench of alcohol. The Mississippi River. An old woman with curlers in her hair riding MetroLink. Snow. Numbness. Cold. Stirrups. Pain. Pain. Pain. Blood. Pain. My toenails. Paying $2.25 for a can of soda on Amtrak. My mother’s 80th birthday. The waiting room. Listening to a conversation on Amtrak and learning that Amtrak crosses five different rail lines between Springfield and St. Louis. Pain. Speculum. Cramps. Cramps. Cramps. Ibuprofin. Endometrial biopsy. Testing the tornado sirens.

I’ve had Queen’s “Bohemian Rhapsody,” Simon and Garfunkel’s “America” and Arlo Guthrie’s “Alice’s Restaurant” playing as a soundtrack in my head.

Why is the Department of Gynecologic Oncology located on the 13th floor of the Center for Advanced Medicine? Why does a hospital have a 13th floor?

This morning I understood how a condemned prisoner must feel waking up knowing today is the day he is going to die. I felt like a dead woman walking.

I’m numb. I’m wrapped in a cocoon of numbness. I watch the winter landscape pass by outside and it doesn’t register. All I can think of is today I’m having an endometrial biopsy.

I have been reamed, gutted and scraped raw today. My vagina feels as if someone rubbed it with 30 grit sandpaper.

I’m tired. I’m bleeding. I’m ready to go home.

I’m sitting in the Amtrak station in St. Louis waiting for my 5:30 train. I should get home around 7:30 tonight.

Last night I wanted to go out and get drunk and have raunchy sex with a complete stranger. What stopped me was thinking my gynecologic oncologist would not appreciate me showing up reeking of stale whiskey and sex. Now I imagine I would scream. Sex is the last thing on my mind.

Whiskey would taste awfully good right now. It might dull the pain between my legs. I took four Ibuprofin this morning and it didn’t help.

I was supposed to meet up with a woman I interviewed for my piece on endometrial cancer for spryliving.com but my appointment ran long and we weren’t able to meet. She promised me when I come back for my follow-up in two weeks, she’ll keep the date open and she’ll buy me a drink.

I showed up five minutes late for my appointment because Amtrak was running 20 minutes behind schedule. I was running behind schedule too, despite the fact I was up at 5 a.m. I had planned to take the bus downtown but ended up walking 12 blocks. I was afraid I was going to miss the train because I had to stop at the bank and make a deposit. The teller smiled and said, “Have a great day.” I looked her right in the eye and said “I’m having an endometrial biopsy today. I might have cancer.” and walked out. This is why I hate that banal phrase. You never know the kind of day the other person is having.

I fill out paper work and wait. The waiting rooms are located along a long hallway lined with glass windows that look out over the St. Louis skyline. The waiting room has non-descript carpet on the floor and uncomfortable chairs covered with a leaf motif print. Cheap artwork adorns the walls and easy listening music is playing. The room is designed for functionality, not for comfort.

When my name is called, a nurse leads me back and weighs and measures me and takes my blood pressure and temperature. I weigh 241 pounds and my blood pressure is 162 over 102. She escorts me to the exam room and asks me to undress from the waist down. I get to keep my grey sweatshirt on.

I perch on the exam table with a thin blue cotton sheet over my lap. When she comes back in the room, I hand her my cell phone and ask her to take a selfie. At first she thinks I mean of me lying on the exam table but I tell her I want one of me full frontal. We’re both laughing and I put my feet in the stirrups and get ready for my closeup. I tell her I’ve been in jail and I’ve been strip searched and talked about the experience on stage. Why not? She said I was the first woman who ever wanted her picture taken with her feet in the stirrups.

I told her a survivor said you either curl up in a corner and suck your thumb and cry or you can laugh about it. I’ve chosen to laugh.

The instruments are set up for a Pap smear and are laid out on the counter. There are cotton swabs and a container for the sample and several other instruments. What I particularly notice is the dirty floor. There is a cotton swab lying on the floor in front of the trash can and what looks like a blood spot on the floor.

I immediately like my gynecologic oncologist when he comes in the room. I get into position and he asks me why I’m there. When I tell him I’ve been having unusual uterine bleeding, he switches gears and says I need to have an endometrial biopsy.

I feel it when he inserts the speculum. The stainless steel blades press again the walls of my vaginal canal and it’s all I can do to tell him to take it out. Now. He apologizes for the pain he’s causing and says “Cramp cramp cramp” before the cramps hit me. I’m clutching the sides of the table, eyes clenched shut, trying not to scream, moaning. All I can focus on is the metal speculum jammed inside me. It’s an alien object and doesn’t belong there.

It’s done. It’s such a huge relief when he removes the speculum. My gynecologic oncologist takes my hand and helps me sit up and asks if I’m alright. He and his nurse leave the room so I can clean up and dress. They’re thoughtful enough to leave a pad on the counter for me, even though I had come prepared and brought my own supplies. I’m wet, and not all of it is from blood, and I’m doing a fair amount of bleeding. Why do women self-lubricate in times like this?

This contains a sample of my endometrial lining for biopsy.

He sees me in his office afterwards. He keeps patting me on the shoulder and asking if I’m alright. If I have to fight a cancer battle, I want him on my side.

All I can do now is wait. I will know the results of the biopsy in five to six days. I have a follow-up appointment in two weeks.

I can do this. I’ve survived being hit by lightning. I’ve jumped out of an airplane. I can do this. When I begin to falter, I read a few pages out of “A Teaspoon of Courage” by Bradley Trevor Greive. I need all the courage I can get right now.

Today

My endometrial biopsy is scheduled for 1 p.m. at the Center for Advanced Medicine in St. Louis.

The New England Journal of Medicine posted this video of an endometrial biopsy on YouTube.com. Don’t you wish you were me today?

Today is my mother’s 80th birthday.

Three Days

Today is March 1 and central Illinois, where I live, is expecting up to 10 inches of snow this weekend. The weather is as tempestuous as my mood has been the past few weeks. I have been lashing out at everyone around me at the slightest provocation. One minute I’m feeling great; the next I am curled up in bed clutching my much-loved teddy bear and fighting back tears. My life feels as though I’ve hit the pause button.

In three days, I am having an endometrial biopsy. To say I am scared is putting it mildly. Terrified would probably be the more correct term to use. This is not my first one. This time around I am presenting with a very scary symptom – abnormal uterine bleeding. If there is one thing women take away from this, if you experience abnormal uterine bleeding, get it checked out. Don’t wait.

I went through menopause in 2005 or 2006 and have not had a period since that time. However, last year I started spotting. At first, it was irregular and I passed it off as nothing to worry about. It gradually got heavier to the point I had to start buying sanitary napkins. I felt like a teenage going through her first menses again. The occasional bleeds turned into six times a month bleeds, accompanied by hard cramps. I just finished a week-long bout of spotting with cramps.

I’m not stupid. I knew something was wrong. After menopause, a woman should not experience uterine bleeding. In 2008, I had had a D & C, which is also referred to as a dilation and curettage. It was an outpatient procedure performed under general anesthetic. My gynecologist went in and used a curette to scrape the inner lining of my uterus to collect samples for examination. I was diagnosed with complex hyperplasia without atypia, which has a three percent risk of developing into full-blown endometrial cancer.

Hyperplasia occurs when the lining of the uterus thickens, which is usually caused by excess estrogen production without progesterone. During your normal menstrual cycle, there is a balance between estrogen and progesterone and you shed your uterine lining each month. When a woman is fat, the excess fat stimulates the body to produce estrogen. After a woman goes through menopause, your body no longer produces progesterone. However, in fat women, your body continues to produce estrogen. Without progesterone, the uterine lining, or endometrium, continues to grow and thicken and the cells can become abnormal.

My gynecologist said the D & C results showed pre-cancerous cellular changes in the lining of my uterus, which would develop into cancer at some point. At that time, I wanted to have a hysterectomy, which my gynecologist didn’t want to do. I was past my child-bearing years so losing my girly parts wouldn’t have bothered me. However, she said because I had never had children, I was very tight and it would have made it harder to do a vaginal hysterectomy.

She started me on standard treatment protocol – oral progesterone therapy. I couldn’t handle it. It was like having a period 24/7. I experienced tremendous mood swings, cramping, constant bleeding, and food cravings. When I contacted my gynecologist, I found out she had left the practice. I weaned myself off the meds and never went back to the doctor. By that time, I had lost my health insurance and couldn’t afford follow-up treatment.

Flash forward to today. I still don’t have health insurance. I am a freelance writer who barely earns enough to survive month to month sometimes. It was only through sheer luck I found the gynecologic oncologist I am seeing Tuesday. I interviewed him for my story on endometrial cancer for spryliving.com.

I have been living with a ticking time bomb inside me since 2008. Tuesday I find out whether or not it has gone off. I have not felt right for a long time and somehow have always known at some point I would face a cancer diagnosis and had long ago accepted I couldn’t afford to do anything about it without insurance. I still don’t know what I’m going to do.

When I spoke with my new gynecologic oncologist on the phone, I told him about me. After I described my symptoms, he got very quiet. He said complex hyperplasia without atypia had a three percent risk of developing into cancer. I then told him about my abnormal uterine bleeding and that I would bleed up to six times a month. At that point, he told me to make an appointment with him.

Yes, I’m terrified. I know my body. I’ve known for the longest time that something wasn’t right. There are times I wish I was stupid. There are days I wish I didn’t have the knowledge that I have stuffed in my brain. I am scared to death that I’ll hear the word cancer even though I’ve been expecting that diagnosis for a long time. Expecting it and hearing it are two different things. What scares me even more is that I’ve found a lump on the left side of my abdomen. It has been there for several months. What if I have cancer and it has already spread? What if it’s already too late?

I will begin the journey to finding out Tuesday.