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.

 

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.

To Scan or Not To Scan

Last week I went for my 6-month check up with my breast surgeon. I’m so grateful that I got connected to her. She’s both brilliant and compassionate with a great bedside manner. She gives me all the time I need to ask as many questions as I want and discuss whatever is on my mind. So I run a lot of things past her and ask her opinion on every medical question I have.

During my check up she did a breast exam and found no lumps or areas of concern. I do get a rash on my left breast, which is my breast cancer side, so that always worries me. Rashes are on the list of ‘red flags’ to talk to your doctor about. My breast surgeon said that the rash looks ok and because of the fact that it comes and goes means its nothing to worry about. Tumors don’t come and go. So she said everything looked and felt good.

HOORAY!!! Let’s take a moment to appreciate that.

Hooray

I still do my monthly breast exams, as my doctors recommend, feeling around my implants for any tumors that might pop up if any breast tissue was left during my mastectomy. But now I have to get to know my new boobs, and understand what feels normal and what I should be concerned about. So at every doctor’s appointment, I ask my breast surgeon about everything that feels unusual. Luckily, everything I’ve asked about she says is normal.

I also asked my breast surgeon about doing scans to see if my cancer has returned. There’s a lot of conflicting opinions about scans in the medical and cancer world. Some people and doctors think that scans can give people cancer from the radiation (ironic, huh!). And some people and doctors think that doing scans are good to be able to detect cancer early, which raises the survival rate. Early detection saves lives, right?

I’m really conflicted about this. Scans bring on scanxiety. What are they going to find when they do a scan? Then what do I have to do when that something is found – more surgery, more chemo? Ugh! But for me, not doing scans means the constant worry of something growing inside me that I don’t know about, which will keep growing until I feel it myself or get a symptom on the ‘red flag’ list for cancer recurrence.

What a shitty choice? Is ignorance bliss? Or is ignorance stupidity? Do the risks of radiation from scans outweigh the risk of not finding cancer early? Or is it the other way around?

I’m leaning toward doing scans. I’d like to know that I’m cancer-free every year. Mentally that helps me continue to live my life and make plans for my future. Not knowing how long I’ll be here is unsettling – to say the least. And I know that I can get a scan one day and then 3 months later cancer could return. Nothing is guaranteed. At least a clean scan lets me exhale and breath for a moment.

My breast surgeon originally said that we should do MRIs every year to watch for a recurrence. But when I talked to her about it last week, she said she usually recommends MRIs every 2-3 years. (I can’t do mammograms with breast implants, so MRIs are the way to watch for lumps. One of the few positives out of having breast cancer – no mammograms.)

We decided we’d revisit the scans discussion at my next 6 month appointment. My breast surgeon said that most health insurance companies don’t cover MRIs every year. How messed up is that! I have pretty good insurance, so I have to check on that. I’m going to pissed if she’s right.

I spent every other month in 2013 doing ultrasounds to watch for ovarian cancer. That much screening was quite overwhelming and difficult for me. So doing a scan for breast cancer every 2-3 years sounds really good right now.

So for now I’m left to decide – to scan or not to scan?

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.

Wishing For Less In 2014

2013 was a busy year for me. Finishing treatment for breast cancer, monitoring every other month for ovarian cancer, surgery for possible ovarian cancer and dealing with the emotions of all of this.

For 2014, I’m hoping for less.

Less doctors’ appointments.

Less surgeries – actually hoping for a surgery-free year, or several years.

Less scans (and less scanxiety).

Less phone calls, emails and texts to family members and friends that start with, “Well, the doctors see something else that they’re concerned about. I have to have another test to find out more.”

Less worrying.

Less pill taking – 1 year of Tamoxifen done, 9 more years to go. But who’s counting?

Less hot flashes.

Less aches and pains.

Less sleepless nights.

Less naps to make up for the fatigue associated with cancer treatment.

Less tears – although some, not many, felt good to get out.

Here’s to less in 2014.

Finally Caught A Break

Three weeks ago today, I went in for surgery to see if I had ovarian cancer. As I blogged before the surgery, we weren’t sure what we were going to find. Just a little nerve racking.

It was a long two and a half weeks between my first meeting with my gyno oncologist and my day of surgery. I was convinced I was going to have ovarian cancer. I was preparing for the worst — a complete hysterectomy, months of chemo, chemo brain, losing my hair, eyebrows and eyelashes again, and who knows what else. I couldn’t even really process the choice that I was making about having my ovaries removed. I was clear about my decision to do this, but would have to later deal with the feelings surrounding this decision. I don’t have children yet, but definitely want them. But at this point, I just wanted to be alive to be able to figure out how to do that. Would I even survive having ovarian cancer? The statistics on ovarian cancer are not good. I haven’t caught a break up until this point, so why would this time be any different?

I arrived at the hospital at 5.30am for a 7.30am surgery. I think I got about an hour of sleep the night before. Obviously I couldn’t stop my mind from racing.

The nurse walked me back into the pre-op room, took my vitals, asked me my name and birthdate a million times, and hooked up my IV. Then I was left by myself in the room for a while. This is when I lost it. Couldn’t stop crying. I was so scared. My life was about to take a dramatic turn…again.

My family came into the room and we all had a good cry together. Very few words were said — I mean, what’s there really to say? I think we were all hoping for the best but expecting the worst. You can be knocked down only so many times before you stop believing that you won’t get hit.

They started the anesthesia and luckily that’s the last thing I remember before waking up after surgery.

Surgery was supposed to take 3 hours, but only took 45 minutes. They removed by ovaries and tubes, and tested the lesion. It quickly came back benign. They closed me up and we were done.

No ovarian cancer!

YIPPEE!!! Hooray!!! Woo-hoo!!!

I came to after surgery and the nurse told me the good news while I was in recovery. I couldn’t believe it. Am I dreaming? Am I still in surgery? Is this really happening?

They rolled me from the recovery room to a regular room to rest before leaving the hospital. My family came into the room cheering and smiling, giving hugs and kisses to me. I’d never been so happy and relieved in my life.

It’s been a long year and a half of tests and bad news. For once, it was so great to get good news from a doctor, telling me I don’t have cancer.

I finally caught a break.

Yippee

Riding The Coaster

As I wrote in my last blog post, I need to have surgery to find out if what they see on my ultrasound is ovarian cancer. I met with my gynecologist oncologist last week and surgery is set for tomorrow.

When I named this blog – navigating the roller coaster of being a breast cancer survivor – I didn’t know how true these words would be. This week it’s really hitting me. Being a cancer survivor really is a roller coaster. Sometimes you’re up, sometimes you’re down. These past two weeks have been a lot of downs.

I’m in a bit of shock about it all. How can this be happening to me? Again. It’s going to suck to have to go through chemo again. I know I might be jumping the gun on this, but once you’ve had a cancer diagnosis, it’s hard to believe that everything will be ok.

This week I’ve been nauseous, have had stomach pains and don’t have an appetite. Is that ovarian cancer or is that nerves? I guess we’ll know tomorrow.

Fingers crossed for good news. I could really use some.

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.

Sometimes…Reality Bites

The day of my breast cancer diagnosis, I was tested for the breast cancer gene, BRCA. A week later I found out I have BRCA2. The BRCA name is misleading, because it is also the gene for ovarian cancer.

Since I have BRCA2, I have a higher chance of getting ovarian cancer. So, I have to go for regular check ups with my gynecologist. These check ups include getting an ultrasound and the CA 125 blood test, which is the blood test for ovarian cancer.

These check ups with my gynecologist are always very emotional for me. I have to sit among a lot of pregnant women. I haven’t been pregnant yet and would like to at some point in the near future. My doctor’s advise me not to get pregnant while taking tamoxifen. Tamoxifen is the estrogen suppressant drug woman go on after having breast cancer. It’s supposed to decrease your chances of a recurrence of breast cancer, since breast cancer tumors feed on estrogen.

Like I said, it’s always hard to sit in that waiting room, with those pregnant ladies. They’re all visiting their doctor for a happy reason. Me…not so much.

Don’t get me wrong, I love pregnant ladies. Some of my best friends are pregnant ladies. But do they all have to be sitting in my doctor’s office while I wait to get checked for ovarian cancer?

Last week I went for my regular check up of my ovaries. It was my third check of my ovaries in 6 months, so I thought I was prepared. I brought a mindless magazine and some happy music to distract myself from all the pregnant ladies.

As I sat in the waiting room of my gynecologist’s office, a pregnant woman and her husband came out of the doctor’s office with a sonogram photo. The pregnant woman’s mother was in the waiting room and jumped out of her chair to look at the photo. She started screaming with joy. The three of them talked loudly about how excited they were for their first sonogram photo.

I started crying, uncontrollably. I turned my music up and tried to focus on my magazine. But nothing was calming me down.

These three people were so excited about their future and their great appointment with their doctor. And I was waiting to be checked for ovarian cancer, after having spent the last year fighting breast cancer. The reality of my life hit me like a ton of bricks.

As I sat there crying in the waiting room, I couldn’t help but think about my future – hoping that I would have a future, and a long future. Would I be around long enough to have babies? Would I be able to physically have babies after everything my body endured over the last year? Life felt very cruel at that moment.

Life is uncertain and often times unfair. That’s a tough lesson to keep learning.

The good news is that my ultrasound was normal and my blood test came back normal. So I have 3 months of a break before I have to go for that check up again. Maybe next time it will hurt a little less.