A Constant Reminder of Loss

When was the first day of your last period?

That’s the question the nurse asked me at my annual gynecological exam on Friday.

Here’s what I said: I don’t get my period anymore.

Here’s what I wanted to say: I don’t get my period anymore because I had to have my ovaries removed after I went through treatment for breast cancer. I have the BRCA2 mutation, which increases my risk for ovarian cancer. So, no, I don’t get my period anymore and I’m in menopause at the age of 41. I know its not your fault, and I’ve never met you before so you’re probably new, since I’ve been coming here every few months over the last 2 years…but shouldn’t that detail about no longer getting periods be in my chart? What’s the point of having a chart if no one looks at it before talking to me?

Prior to this question from the nurse, I had been sitting in the doctor’s waiting room for 30 minutes with a ton of pregnant ladies. Me with my no ovary womb and them with their big, beautiful bellies. Me empty, them full. Literally and figuratively.

At every doctor’s appointment do I have to be reminded of this? I still see one of my doctors every 3 months – either my gynecologist, my oncologist, my breast surgeon, my plastic surgeon or radiation oncologist. That’s a lot of doctors and a lot of times having to reiterate my history to a nurse: I was diagnosed with breast cancer at 39. I had a double mastectomy. Then 8 rounds of chemo that lasted 4 months. Then breast reconstruction surgery. Then 32 rounds of radiation that occurred every week day for 7 weeks. Then, just when I thought I’d get a break from cancer, the possibility of ovarian cancer crept up during my bi-monthly screenings of my ovaries. So I had to have another surgery to do a biopsy of my ovaries and decided it was just time for my ovaries to be removed.

It’s difficult to move on with my life when, at every turn, something or someone makes my forward progression pause or take a step back. I know I won’t every really be able to put cancer behind me, and I actually don’t want to forget about having cancer and surviving, but does every doctor’s appointment have to bring something up that reminds me of what I’ve lost?

It’s hard enough to be going through early menopause – hot flashes, interruption of sleep, weight issues, achy body. Do I also have to be reminded of what I’ve lost from cancer? I’ve lost both of my breasts, I’ve lost both of my ovaries, I’ve lost the carefree lifestyle that made me believe I’d live to be 90, I’ve lost my patience and my ‘let’s wait and see’ approach to life, and I’ve lost my ability to have biological children and breastfeed them.

So, when was my last period? November of 2013. Maybe the next nurse could just skip this question and go to the next one on the list.

 

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This Roller Coaster Is No Joke

When I wrote the tagline to this blog – navigating the roller coaster of being a breast cancer survivor – I had no idea how true it was.

Shortly after I finished chemo in September 2012, I mustered the energy to attend my first support group for young women with breast cancer. My mastectomy and reconstruction surgeries were behind me and I was about to start radiation. I finally felt ready to start talking to other women about what I was going through.

At my first support group meeting, one of the women said that she found being a survivor harder than being in active treatment. She said life as a survivor is full of ups and downs. Tears streamed down her face as she explained her range of emotions. I kept looking at her, then looking down at the floor, thinking she was out of her mind. How could being a survivor be harder than being in active treatment? Chemo, surgeries and radiation, having doctors appointments every week (if not multiple times a week), loosing your hair, chemo brain, nausea, depression, exhaustion … the list goes on.

Well, now I’m a survivor (I hate that term, but that’s another post for another time). And now I get what she was saying.

I’m happy to now be cancer free for 2 years, but the fear of a recurrence is something I think will be with me forever. Worrying about the aches and pains that used to just be a passing thought, now leads to sleepless nights and anxious days.

About a month ago I started feeling some soreness in my pelvic area. I wouldn’t say it was pain, but it was definitely not a normal feeling for me. The rule in cancer world is that if something feelings wrong for two weeks, its time to contact your doctor.

Since completing treatment, I’ve been exercising more. I have gotten back to swimming 2-3 times a week. And I started running again, after a 2-year hiatus since my cancer diagnosis. So I was hoping that it was just my body getting used to more physical activity with my new body. But there’s always that little voice in my head that says, “Oh fuck. Here we go again.” Its hard to quiet that voice down.

So after two weeks with the soreness persisting, I emailed my gynecologist to ask her about it. I was hoping she would say it was nothing to worry about, but because of my history and my BRCA2 mutation, she always errs on the side of caution. It’s one of the reasons she’s my gynecologist. She doesn’t make me feel crazy for wanting to check out an ache or pain. She’s just as worried as I am when something doesn’t feel or seem right with my body. Well, maybe not just as worried, but you get what I’m saying.

I called my mom to tell her what was happening and I totally lost it. I just couldn’t stop crying. The fear was really bubbling to the top. I could barely get the words out of my mouth to explain to my mom what was going on. My mom was so great. All she said was, “I’m here for you and we’ll get through this together.” It was exactly what I needed to hear from her.

As you can imagine, the night before my appointment was a long one. Could this really be happening?

I went to my gynecologist and did an ultrasound. As I lay on the exam table, in the stirrups, starring at the image on the screen, I couldn’t help but go to that bad place – ovarian cancer, more surgeries, more chemo. Would I survive this?

The technician said that she didn’t see anything of concern but I should wait to hear the official word from my gynecologist. She even said I had a beautiful uterus. That certainly made me laugh and calmed me down a bit. A beautiful uterus – ha!

My gynecologist quickly came into the room and said everything looked fine. But she wanted to do a pelvic exam just to double check. Nothing showed up there either. She told me everything looked good. She said it could be tamoxifen that’s making me achy. Or it could be the exercising that I’m doing. I haven’t used a lot of those muscles this much in 2 years. So my body might be adjusting. Then she said, “It might be just because you’re getting old.” I should be so lucky to have aches and pains from getting old.

So I left her office and immediately started crying. I felt like I dodged a bullet. Still cancer free. Saying I felt relieved is an understatement.

Life as a cancer survivor is rough. Every ache and pain is a concern. That little voice in my head never goes away. There are moments of being happy that I’m alive and grateful to have so many wonderful friends and family members that I love and love me. But I also have lots of moments where I’m scared to not be able to live a full life doing all the things I want. Every week I hear about someone who’s died from cancer. Not that dying of cancer at an older age is any easier, but hearing of young adults dying really hits home. It’s hard to silence that little voice in my head that wonders if that’ll be me in the near future.

Two years after my diagnosis and I’m still learning how to navigate the roller coaster of being a breast cancer survivor – taking it one day at a time.

Could It Really Be…An Uneventful Doctor’s Appointment

Last Friday, I had an uneventful doctor’s appointment. Let me say it again – I had an uneventful doctor’s appointment. It feels weird to write it. Kind of a foreign concept to me at this point.

Last Friday I went for my first doctor’s appointment of 2014. The appointment was with my gynecologist for my annual exam.

We spent the first part of the appointment with her asking me how I was feeling since having my ovaries removed. How were my hot flashes? (Not great but bearable.) Was I having any pain? (Thankfully, no.) Was I having any vaginal dryness? (Again, thankfully no.)

Then I asked her a series of questions. I will never menstruate again, right? (Right. I knew the answer to this, but just wanted to confirm it before throwing away all my tampons.) What about osteoporosis? (Since I’m at a higher risk for osteoporosis from having my ovaries out, I should eat more foods with calcium or take a supplement.) Since I don’t have ovaries, I don’t have to worry about an unplanned pregnancy, but I should still protect against STDs, right? (Yes, condoms are suggested.) Do I need to continue to do ultrasounds since I still have a 1% chance of ovarian cancer, even though I removed my ovaries? (Thankfully the answer to that was no! Even though you can get ovarian cancer that starts in the uterus, the symptoms will show up in the early stage. Doesn’t seem fair that I remove my ovaries and can still get ovarian cancer, but ok. I also can get breast cancer again even though I removed both of my breasts. But that’s another blog post for another time.)

My gynecologist then told me she wasn’t going to do a breast exam, which I said was fine since I have a regular check up with my breast surgeon at the end of the month. I told her that I have a rash on my left breast, which is my breast cancer breast, but it’s only been there for a few days. Rashes are a warning sign for breast cancer, but I’ve had these on and off over the last year. My doctor’s attribute it to perhaps a reaction to the chlorine in the swimming pool. I told my gynecologist that I’d talk to my breast surgeon about the rash.

Then it was time to get into the stirrups for the vaginal exam. I laid down and my gyno put the speculum in place. She started examining me, then looked up and said, “You’re going to hate hearing this, but there’s a mole on your labia.” I told her that this mole has been there for over 10 years and we biopsied it 10 years ago and it was benign. She said, “Phew. OK, good.”

She finished the exam and said she’d call me with the results of the pap within two weeks. If the test came back normal, she didn’t want to see me again for another year. Fingers crossed.

I got dressed and got out of there as quickly as possible before she could tell me anything else. I know I should continue to be vigilant about my body and anything unusual. But I just want some time where there are no more tests. Where there are no more doctor’s appointments for a while. Where no one is touching me and prodding me. Where no one says, “I see something I don’t like. We need to look at this closer.”

I know you’re never really “done” with cancer. Every week I hear about someone who has a recurrence of some type of cancer. So I do carefully listen to my body and will call my doctor the moment something isn’t right.

But please, could I just have some peace and quiet for a while.

Time For My First Doctor’s Appointment of 2014

This Friday I’ll have my first doctor’s appointment of 2014.

The appointment is with my gynecologist for my annual exam. Two years ago, I would have said the appointment is *just* my annual exam. No big deal. But since my breast cancer diagnosis, just isn’t really in my vocabulary anymore.

I’ll be going to see my gynecologist for the first time since my oophorectomy. It’ll be weird to sit in those stirrups when there’s so much less to look at with no ovaries.

And doing a breast exam with fake boobs….that’s still strange for me too. I can’t feel anything in this area, so its bizarre to have hands on my body with no sensation that this is happening.

They say someday I’ll get used to my new body. Not sure who *they* is, but I’ll believe this when I feel it.

I’m trying to stay calm about this appointment. Since my oophorectomy two months ago, I reduced my risk for ovarian cancer from 15% to 1%. So that should tame my worrying – *should* being the operative word.

It’s hard not to worry about cancer when you’ve had it and you read about so many other people having recurrences. I guess once you’ve had a cancer diagnosis, there’s really no such thing anymore as a routine doctor’s appointment. Another part of my life I have to get used to.

1 Step Forward, 2 Steps Back

Last week I had my regular check up with my gynecologist to watch for ovarian cancer. Since I have the breast cancer gene (BRCA), I am also at a high risk for ovarian cancer. So every 2-3 months I go in for an ultrasound and blood work.

I’ve been doing these ultrasounds since March of this year, so I really thought I was prepared. As I shared in a past blog post, these tests are really emotionally draining. But I was feeling like I was in a good place and ready to tackle this one. I wore my usual good luck pajamas to bed the night before my tests and wore my usual good luck outfit to meet with my gynecologist.

Previous ultrasounds showed cysts on my ovaries, but those would wash away by the time of the next ultrasound. Then new ones would appear and we’d watch those.

I expected this ultrasound to be the same thing. The technician did my ultrasound this past Tuesday and said: so, it looks like we’re just chasing cysts here. We’ll see what the doctor thinks.

So as I waited to see my gynecologist, I started thinking about writing this blog post. I had already decided the title was going to be: Chasing Cysts. I was feeling relieved at the idea that we were just chasing cysts. I can handle chasing cysts.

Then my gynecologist walked into the room. She sat down and had a worried look on her face. She said the cyst is quite large and dark, and has some fluid around it creating a cobweb-like design. None of those things are good news.

My gynecologist said we should wait and see what the blood work comes back with, but she also said she wanted me to meet with a gynecology oncologist to get a second opinion of my ultrasound. So she sent me right over to meet with that doctor.

FUCK! This is when I started freaking out.

This is exactly what happened when I felt my lump last year. I felt my lump, I went to see this same gynecologist, she had me go do a mammogram on the exact same day, and one week later I was diagnosed with breast cancer.

This past Tuesday, I met with my gynecologist, and she sent me to see another doctor the same day, to look into what concerns her. On my way to meet with this gyno oncologist, I even passed by the breast center where I had my mammogram last year. This didn’t make me feel very good or calm me down. Quite the opposite.

When I met with the gyno oncologist, he also had a worried look on his face after looking at my ultrasound. He said a dark cyst with fluid around it is a sign of ovarian cancer. Not what I was hoping to hear, to say the least.

Both my gyno and gyno oncologist are recommending that I do surgery to find out if what they see on the ultrasound is ovarian cancer. I also have to decide if I want to just test the cyst for ovarian cancer or if I want to have my ovaries removed at the time of surgery to significantly lower my risk ovarian, if I don’t have ovarian cancer now.

Difficult decisions and no good options.

On Friday I did get some tentative good news from my gynecologist about my blood work. She said that my blood work came back with a score of 4 for ovarian cancer. Most women with ovarian cancer have a score in the hundred or thousands. So that was reassuring.

However, I am still concerned and won’t know for sure if I have ovarian cancer until surgery is done.

While my family and friends are staying positive, I can’t stop myself from thinking about having to go through chemo again. Once you’ve had cancer, its hard to stay hopeful and positive when the doctor has a worried look on their face. It’s hard to believe that this time you won’t have cancer.

Two weeks ago I was feeling good. I was getting my energy back. I was going out with friends. I was going on vacation.

And now this. It sucks.

1 step forward, 2 steps back.