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.

 

And Now … Osteoporosis

I’m 41 years old and have already gone through a double mastectomy, 8 rounds of chemo, 1 reconstructive surgery, 7 weeks of radiation and an oophorectomy (the removal of my ovaries). All because of my breast cancer diagnosis and having the BRCA 2 mutation.

That’s enough for a lifetime, if you ask me.

I went to see my oncologist in May for my 6-month check up. She wanted me to do a bone density test, mainly to get a baseline, she said. Having my ovaries removed and taking tamoxifen, my body is not producing or getting any estrogen, which helps keep bones strong. So I figured I would be at risk for osteoporosis, but not for a while.

Last week I finally did my bone density test, which, by the way, was the easiest test I’ve ever done. No IV, no drugs, no fasting. You lay down, they scan your spine, then they scan one hip. Then you’re done. In and out in 15 minutes. Best. Test. Ever.

Two days later, I got the call from my oncologist. My spine already shows signs of osteoporosis. DAMN IT!

So now she wants me to be given a drug called Zometa. Zometa is a bone strengthening drug, which also has shown to prevent recurrences of breast cancer. Both good things.

Here’s the good news – I will only have to be given Zometa once every 6 months (twice a year). It only takes 15 minutes to administer the drug.

Now the unsettling part – Zometa is given through an IV. That kind of sucks. But the worst part – I have to go to the chemo area of the hospital to get the infusion.

I never wanted (or want) to see that stupid chemo area again. When I said goodbye to those lovely nurses who helped me through chemo two years ago, I said goodbye. Not see you later. Goodbye. Have a good life. I’ll never see you again.

But here I am, being told to get an osteoporosis drug administered in the chemo area of the hospital.

Now, I know I should be grateful that I’m only going there for osteoporosis, and not because I have a recurrence of breast cancer or some other cancer (fingers crossed that’s always the case). And I should be grateful that my oncologist is aggressive and assertive on my behalf with any health issue. But that somehow isn’t making the tears stop flowing when I think about walking into that chemo area. Having to see all those people, who I used to be one of, get chemo – that’s going to be hard. Talk about PTSD.

I guess the other upsetting part is that this is just one more thing I have to do now because of stupid f*$%ing breast cancer.

I see at least 1 doctor every 3 months, I get blood work done every 6 months, I go for scans every year, and now I have to go get this drug pumped into me every 6 moths. It’s just one more thing that I have to do in a hospital with doctors. And that just sucks.

It reinforces the fact that you’re never really done with cancer. There’s always something.

Welcome Back Freedom – So Nice To See You Again

I love fireworks. Always have, always will. They are not only beautiful and inspiring, but they bring back great memories of summers with my family and at camp.

The last three years I haven’t watched fireworks on July 4th. Since my breast cancer diagnosis in 2012, I was either too tired from my mastectomy and chemo, too tired from radiation or it was too hot for me to be outside to watch fireworks.

But this year was different.

I’ve been staying up later these days – actually able to stay awake until 10.30 p.m. That’s a major accomplishment for me. For the first two years after treatment finished, I could barely stay awake until 9 p.m. So 10.30 p.m. is huge! Small victories, right?

This year was also perfect weather to watch fireworks. It was a beautiful night with temperatures in the 70s. Couldn’t ask for better weather in July.

So I took a walk down to the Washington monument, which is about a mile and a half from my home. That’s another thing I couldn’t do in the last three years – walk for three miles at 9 p.m. I used to get tired after about 20 minutes of walking at night. It feels great to have more energy and stamina.

Over the last three years, it has felt like cancer robbed me of so much in my life – my body changed (not in a good way), my mind got slower and foggier (thanks chemobrain), my energy levels dropped, my insecurities about my future went to new heights…the list goes on.

But this July 4th, it felt like I regained some of my freedom. A freedom to live my life how I used to – going where I wanted, when I wanted, how I wanted. It’s amazing to be able to do that again.

And I’m sure there will be other nights where I’m too tired to do anything or its too hot to be outside, but for right now, I’m enjoying this new found freedom. I often wondered if this day would ever come. So nice that it has.

Fireworks Fireworks

How Do You Tell Someone Those Three Words: I Had Cancer

A couple nights ago I went for dinner with a friend from college. She was one of my best friends at the time, but I hadn’t seen her in almost 20 years. We’ve stayed in touch through Facebook, but I don’t share the intimate details of my life on there.

I was excited to see my old friend, but was pretty nervous about sharing with her that I had breast cancer. Sure, I’ve told many people about my diagnosis and treatment. But how do you share this with someone you haven’t seen in 20 years. When she says, “How are you?” Do I automatically say, “Well, I spent 2012 going through treatment for breast cancer.” It’s not really something you just blurt out when someone asks how you are. Or at least I don’t.

And I’m still hesitant to tell people about my breast cancer because I don’t know how they will react. I want to share this personal experience with most people, but I never know what someone will say or do when I tell them I’ve had cancer. I’ve had people start crying, and then I have to tell them that it’s ok. I don’t really want to be taking care of someone else when I’m the one who’s had cancer.

And then there are the people that just give you a blank stare. They never know what to say so they usually say nothing. That’s awkward too.

So, my friend and I started chatting and I quickly got up the courage to tell her about my breast cancer. I shouldn’t be surprised by this, but she immediately told me that her sister-in-law went through the same exact diagnosis and treatment as me, at the exact same time, at the exact same age (39). To say that cancer is an epidemic is an understatement.

While I obviously wasn’t happy to hear about my friend’s sister-in-law, I was so relieved to be able to talk about breast cancer with someone who had seen it first hand. She hasn’t been through it herself, but she certainly learned how to talk about breast cancer in a caring way. My friend was amazingly supportive, without making me feel like she was feeling sorry for me.

We talked all about what I’ve been through physically as well as emotionally. How scary it was. How crappy it was. How I’m doing now. My thoughts on the future.

And most people can’t even muster up the courage to use these words, but the phrase “I’m still here” came up a lot. My friend wasn’t afraid to talk about that with me, while most people can’t even think those words, let alone say them out loud. It was so wonderful to be able to be honest with her about how much cancer sucked and still sucks, without me having to sugar coat it for her. That’s a true friend.

But while I sit here reflecting on how great it was to see my old, dear friend, it reminds me that I’m still trying to figure out how to tell people I’ve had cancer. This goes for strangers as well as friends I haven’t seen in years.

So how do you tell someone that you’ve had cancer?

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.

My Two Year Cancerversary

Today is my cancerversary.

There are different days that people choose as their cancerversary. Some people use the day they’re diagnosed. Others use the day that they are declared cancer free. For me, I choose the day of my mastectomy – when they removed the tumor in my breast and the tumors that spread to my lymph nodes – and they considered me cancer free.

My mastectomy was on April 17, 2012. That’s two years ago today.

I’ve been thinking about this day for weeks. I was really expecting to be celebrating. I’ve been cancer free for two years. That’s kind of a big deal. Actually not kind of. It is a big deal.

And most importantly, I’m still here.

My prognosis at diagnosis was good, but you just never know what will happen. I knew that reality before, but cancer reinforced my belief that life is unpredictable and bad shit happens. Not much you can do about that.

So I figured I would be really happy to be reaching the two year mark. But I woke up this morning to find myself feeling melancholy. That’s actually a nicer word than what I’m really feeling. A more accurate word is just downright sad.

Although I’m physically feeling good after all my body has been through – a mastectomy, chemo and radiation – I seem to find my thinking, “Is this really my life now?”

Survivorship is hard. I know I’m one of the lucky ones. I did survive. But a day doesn’t go by that I don’t think about my cancer coming back or showing up somewhere else. 30% of early stage breast cancer comes back as stage 4. I was stage 2 at diagnosis. Fingers crossed I don’t become stage 4.

Don’t get me wrong, I think I’ve made good progress in the last two years. And I’m proud of myself for that. I’ve been getting back to the things I used to do before cancer – going out with friends, visiting my family, working normal hours, going on trips, swimming, running, yoga. And I have more good days than bad ones.

But I now know that my life will never be like it was before cancer. My body aches like a 90 year old lady sometimes. I’m still getting used to my new body – both how it looks and how it feels. I get tired a lot earlier in the evening than I used to before. I now have a pill box to organize my daily medication, so I don’t forget to take it. I guess that’s what makes me sad today.

Today reminds me that I’ve lost a lot of my carefree tendencies. I take life a lot more seriously. Now I wonder how long I have to do the things that I really want to do. Will I get to have kids? If I do, how long will I be around to be a part of their lives.

I’ve been lucky to have found a great support group through the Young Survival Coalition. These women that I get together with every month make me feel less alone. We can talk about our fears and concerns. And how hard survivorship is. We can even laugh about things like forgetting where we parked our cars because of our chemo brain.

They say that eventually you stop thinking about cancer every day. I hope they’re right. But its hard for me to imagine that day. Right now it feels like two steps forward and one step back. I guess I just continue to do what I’ve done over the last two years – just take it one day at a time.

Birthdays Are Now Bittersweet

Tomorrow is my 41st birthday. It’s also the day before I was diagnosed with breast cancer two years ago.

I used to love my birthday. Since I was a kid, my mom always made a big deal of birthdays. They were fun and special. But that was before cancer came into my life. Now my birthdays are bittersweet with new significance.

Every birthday is now a big fuck you to cancer. Another year I’ve survived. Another year that I’m able to be around to talk about having had cancer. Another year that I’m able to keep dreaming about growing old.

Tomorrow is only my 2nd birthday having survived cancer. So I feel like I’m still figuring out the roller coaster of being a cancer survivor and being able to celebrate my birthday without getting upset that the day after is my diagnosis day. It’s hard to separate the two days.

Two years ago, I felt my lump a week before my birthday. My friends and family wanted to celebrate my birthday, but I knew that a diagnosis was coming. So I didn’t much feel like celebrating. I couldn’t stop crying about what I knew would be a change for the worse in my life. Even though the results weren’t in yet, I just knew I was in for a long treatment for breast cancer.

Last year, I had finished chemo and radiation just two months before my birthday. My hair was starting to come back, which felt great, but I was just beginning to deal with everything I had gone through. It wasn’t until after I was finished with treatment that I could attempt to process what had just happened. So, by the time my birthday came around, I was trying to make sense of what I went through and couldn’t stop crying about it.

But this year, I’m looking forward to celebrating my birthday The usual things will happen, as they have all my life – people will call to tell me happy birthday and how much they love me. I’ll get cards in the mail or emails wishing me a great day. I’ll go out for dinner with people I love, a great reminder of how lucky I am to have amazing people in my life.

And I’m sure I’ll be crying again this year, but this time those tears will be grateful tears. Grateful that I’m here to celebrate another birthday. Grateful that I’m cancer free (fingers crossed that lasts for another 41 years). Grateful that I have so many wonderful people who support me in happy times and tough times.

Another Study Asks If Mammograms Are Helpful or Harmful

In yesterday’s New York Times, there was an article, “Vast Study Casts Doubts on Value of Mammograms.” The writer explains how the study questions whether mammograms save lives or impose unneeded tests and treatment. You can imagine how upsetting this uncertainty is, especially for a breast cancer survivor.

In all cancers, there is a long-standing debate about how worthwhile scans are versus the radiation imposed on the body from these tests and the anxiety induced from such tests versus leaving a tumor in place that wouldn’t harm or kill someone. I understand the arguments on all sides, but I always have a strong reaction when someone says mammograms aren’t worth it.

For me, if one life was saved from an annual mammogram, then it’s worth doing. Especially if that one life is mine or someone I love.

I was diagnosed with breast cancer at the age of 39. I hadn’t yet had a mammogram. Even though I come from a long line of women with breast cancer, none of my doctors suggested I get a mammogram before turning 40. And a few years earlier, a national government panel recommended mammograms be done starting at 50, instead of 40. Even more reason for my doctors to not push for a mammogram.

I often kick myself about not insisting that I get an annual mammogram starting at 35 years old, because of my family history. I found my lump in a routine self-exam, which I did without fail every month since I was in college. If I did get annual mammograms before age 40, would we have found my breast cancer earlier? Would we have found it before it spread to my lymph nodes? Would it have spared me having a mastectomy? Would I not have had to go through chemo and radiation? Of course we don’t know and will never know the answers to these questions. What ifs do little but create guilt. So I try to let that go. But I do admit it creeps into my mind sometimes.

Dr. Susan Love, one of the smartest, most well-known and accomplished surgeons and advocates on breast cancer, was interviewed about this study on KRCW’s Press Play with Madeleine Brand. Dr. Love talks about how there have long been questions about mammograms. And how this study shows that there are many different types of breast cancers and there isn’t a one size fits all approach to breast cancer screening and treatment. Which means we need research and studies to continue.

As Dr. Carol Lee of Memorial Sloan Kettering Cancer Center explains on the PBS NewsHour, this study is an update on a study reported nearly 20 years ago. Her opinion is that this study is just one in a long list of studies about mammograms that actually show a benefit of mammograms. Her opinion is that mammograms do save lives. I tend to agree with her.

I have another problem with this study, which was done with women ages 40-59. Once again, when breast cancer is researched, talked and written about, young women (women 40 and under) and women of color are barely, if at all, discussed.

As the Young Survival Coalition states, it is estimated that more than 250,000 women diagnosed with breast cancer at 40 or younger are living in the U.S. today. More than 13,000 young women will be diagnosed this year.

Mortality rates for breast cancer have been decreasing since 1989, with larger decreases in women under 50. That’s great new. But what about women under 40? The survival rates for young women are not good. Compared to older women, young women generally face more aggressive cancers and lower survival rates. The statistics on women of color aren’t good either. Although the overall lifetime risk of breast cancer is lower for Black women compared with white women, the death rates are higher.

Would annual mammograms save the lives of more young women and women of color?

When we look at the benefits and disadvantages of mammograms, let’s expand the conversation. Let’s look at all types of breast cancers, all ages of women and all ethnicities. Not until there’s a cure for breast cancer or a vaccine, the goal continues to be to save lives. And in my opinion, annual mammograms play a part in that.

Waiting To Hear Those Three Little Letters…NED

Today I had my 9 month check up with my radiologist. It still feels weird to say I have a radiologist. I’m 40 years old, talking like I’m 70.

Last night I slept in my good luck pajamas – striped tank top and grey sweatpants. I always wear these the night before any doctor’s appointment or test. Today I wore my good luck outfit – black skirt, maroon top and gold/silver/peach necklace my sister gave me for my 40th birthday. I wear this outfit the day of any doctor’s appointment or test. Call me crazy or superstitious. But these rituals have helped me stay calm and seem to bring me good news. So why mess with a good thing.

photo copy

I drove to the hospital today for my appointment and parked in my usual spot. They reserve parking spots for cancer patients. Nice that they do that. Kind of messed up that one of those spots is reserved for me. I spent 5 days a week for 8 weeks parking in that spot. I never got used to parking there or walking into the Cancer Center. People always looked at me funny when I parked there, like I shouldn’t be the one getting out of that car parked in that spot. I know the feeling.

I walked into the hospital and signed in. The receptionist said, “Hi. Nice to see you.” It was nice to see her too, but I have to be honest, it wasn’t nice to be back in that place. As I sat in the waiting room, I saw many women with bald heads. The feelings of being in active treatment came quickly rushing back – swiping my cancer badge to get checked in, undressing and putting on my robe, laying on the cold treatment table, having the technicians get me ready for my treatment, then the technicians leaving the room so they weren’t exposed to the high levels of radiation that was about to be zapped into me.

I’m so glad to be done with that. I was now the woman in the waiting room with an acceptable amount of hair. If I wasn’t in a cancer center, you would have no idea I ever had breast cancer. It’s kind of amazing that it’s been 9 months since I finished my treatments. Some days it feels like it just ended yesterday. Other days it feels like its been years.

All my doctors tell me that most patients find symptoms of recurrence on their own in between doctor’s appointments. They say you just know when the cancer has come back. I’ve been feeling pretty good lately and don’t have any pain, which I’m grateful for. So I wasn’t really worried. But I can’t help listening to that little voice in my head that says maybe I’m not checking myself carefully enough. I felt good and didn’t have any pain before and even weeks after my diagnosis, so I like to get the official word from my doctors that everything looks good to them.

My radiologist today did the usual check up, which included a breast exam. After she was done, she wrote down in my chart NED. That’s cancer lingo for no evidence of disease. YIPPEE!!! HOORAY!!! I’m certainly relieved to see those 3 little letters written down next to my name.

Flowers

My radiologist said she didn’t want to see me again for another year. That’s good news too. I left the hospital feeling really happy. So I bought myself my favorite flowers – lots of beautiful red gerber daisies. So vibrant. So perky. So full of life.

Time to celebrate!

Tired and Impatient

I’m a very patient person…when it comes to other people. When it comes to myself…not so much.

Labor Day weekend – less than two weeks ago – I went to New York for a weekend with my mom and sister. It was a great weekend, but I sure am tired from it – still, two weeks later. It’s so frustrating.

During my breast cancer treatment, many doctors kept telling me that exhaustion was one of the top three side effects from both chemo and radiation. I get that. They pumped my body with toxic drugs and high levels of radiation, so I should be tired. During treatment, I came home after work and took a nap, woke up for dinner, then went to sleep for 10 hours. I was sleeping about 12 hours a day. I was fine with that. I’m a really good sleeper. And that’s what my body needed to survive.

But now it’s almost nine months since I’ve been done with treatment. People tell me that it takes a year to get back to 100% of your regular energy level. So I’m trying to be patient as I still have three more months until my one year mark. But it sure is hard to wait for that time to come around.

I want to go back to doing all my normal stuff – strenuous exercise, going out at night with friends, spending the day out and about, walking around museums – but my body just isn’t there yet. I know, I know…I’ve been through a lot, both in body and mind. I should cut myself a break and be patient. But that’s easier said than done.

The last two weeks I could barely make it through an eight hour day of work. By the time I got home and made dinner, I was ready for bed. And that’s after spending the weekend sleeping in late, taking lots of naps during the day and going to bed early. And that wasn’t enough. I’m still tired.

I’m hoping this weekend will be my final weekend of resting so I’m not exhausted. I’ll again sleep in, take a nap and go to bed early. Hopefully that’ll help get me to the point of just being a little tired, rather than completely exhausted.

I know what you’re going to say…you have to listen to your body and it just needs more time to recover. But why does it have to take so long?