Finally Caught A Break

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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

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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

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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.

I Dream of Getting Old

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Recently, it seems like everywhere I turn, everyone is complaining about getting old. They hate their grey hair. They hate their bald head. They hate their sagging skin. They hate their wrinkles.

I was never one of those people that hated the idea or reality of getting old. I liked it when I saw a grey hair on my head. When I turned 30, I threw myself a huge party to celebrate entering a new decade. While everyone else was grumbling about getting old, I was excited. I felt like getting older meant having more experiences, becoming wiser, knowing yourself more. All good things.

Before my breast cancer diagnosis, I would laugh at people when they moaned about getting old. But now, after facing a life-threatening illness, I get sad when I hear people talk about how much they hate getting old. All I can think is what a luxury it is to grow old. I actually dream about getting old.

I dream about being 90, sitting on a park bench, talking with friends about how great our lives have been. I dream about being able to live a long life where I feel like I’ve been able to do everything I want. I dream about having children and grandchildren, and getting to watch then grow up.

Nothing is life is guaranteed. I’ve always known that. But now it feels very real and personal, rather than just a saying. So I’m trying to live each day to its fullest and spend time with the people that mean the most to me. Whether I have one more year to live or make it to 90, its a good way to live.

But I just can’t help feeling jealous of those people who complain about getting old. I should be so lucky.

Waiting To Hear Those Three Little Letters…NED

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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

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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?

A Glimpse of My Old Life

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This past weekend I went to New York to spend time with my mom and sister, and watch the U.S. Open. It’s our annual Labor Day weekend tradition. We’ve been doing it for about 7 years. Last year at this time I was in the middle of chemo, so clearly I wasn’t gonna make it to New York.

Train Ride to NYCOn the train ride up to New York I got a bit teary thinking about how happy I was to be able to resume this tradition. This weekend with my mom and sister was the first time the three of us have been together since my mastectomy surgery last year. On the train ride I started to think about all the times my mom and sister came to visit me last year, to help me through surgeries and chemo treatments. The tears came again when I thought about how grateful I was to be getting together for something fun and happy.

I also started thinking about how great it was to be doing the activities I used to do before my breast cancer diagnosis. As I made my way up to New York, it almost felt like I was living my old life. It felt like a normal weekend. There’s so much talk in cancer circles about ‘the new normal’ – how to navigate your life after diagnosis and completing treatment. Well, as my friend Katherine says, ‘I like the old normal just fine, thank you.’

There’s something special about New York that makes me feel alive. There are so many people – so many different kinds of people. The hustle bustle of the city is so vibrant. There’s really no other place quite like New York. I love it. My trip to New York couldn’t have come at a better time. It reminded me that life can feel normal at times.

It was hot and humid in New York. My chemo curls were really getting a work out. But I was just so happy to have hair, I didn’t really care how crazy it looked.

U.S. Open at Night

My mom, sister and I went to watch two nights of the U.S. Open. The nights were warm, with a gentle breeze that helped keep things comfortable to sit outside for hours. It kept my hot flashes to a minimum. That was greatly appreciated.

Roger Federer


We got to see Roger Federer, one of my favorites. He played an almost flawless match, barely giving his opponent any chance of coming close to winning a set. I didn’t really care whether it was a great match, I was just happy to be there, literally happy to be alive to be watching tennis again with my mom and sister.

I also got to spend time with a couple of my oldest and dearest friends. Over the last year and a half I’ve been reminded that I’m lucky to have many good friends and family members that support me through life’s challenges. Any chance I get, I want to spent time with these people. It feeds my heart. For me, life is now about nurturing the deep connections with the important people.

After three nights in New York, I got home exhausted. But it felt so great to be exhausted from having too much fun – staying out later than I have in over a year and a half, walking around all day long and warm summer nights. The activities that used to make me exhausted were surgeries and treatments. What a nice change that is.
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Heavy Mortality Thoughts Today

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Today is my dad’s yahrzeit. It’s been 23 years since my dad died from Hodgkin disease. I never know how I’m going to feel during this time each year, but I thought this year I’d be ok. Not really sure why I thought that, but I did. I really did. Then a friend asked what I did last night and I told her I went to shul to remember my dad. That’s when the tears started.

Last year, I had chemo brain during the anniversary of my dad’s death. I was in the middle of my 8 chemo treatments. So I couldn’t really process how his death was affecting me. But today, its hitting me pretty hard.

My dad was a couple weeks shy of his 43rd birthday when he died. He fought 4 bouts of cancer. His body couldn’t handle the toll anymore of 12 years of drugs and damage from treatment. I think he was also tired of the fight. I can’t blame him. I understand the feeling.

Before my diagnosis, the idea of not making it past my 43rd birthday was never a thought that crossed my mind. But now, being in my first year as a breast cancer survivor and being 40 years old, I find myself wondering if I’ll even make it to 43.

I never thought I’d get breast cancer at 39. 65 yes. But not 39. That wasn’t a remote possibility in my mind. But now I know all too well that life is full of surprises – and I’m not talking about the good surprises.

My dad’s yahrzeit and my breast cancer make me think about my mortality a lot these days. How many days or years do I have left? Will my cancer come back like my dad’s did? Will my body give out too like his did? Will I have time to do the things I really want to do?

Obviously I don’t know the answer to any of these questions. And I’m trying to take these overwhelming feelings one day at a time. But what I do know is that this scary stuff.

It’s Not About The Plane Anymore

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Last weekend I flew to visit my family in Michigan. I’ve never liked flying. Whenever I’m on an airplane, I feel that at any moment my life could end. The plane could crash and I would have missed out on so much life. That feeling of being too young to die is always at the forefront of my mind.

Now, when I’m on a plane, the feeling that life is too short takes on a new meaning. And it starts even before I get on the plane, when I put on my compression sleeve.

Since having my mastectomy surgery, I have to wear a compression sleeve whenever I fly to prevent lymphedema.

As I put on the sleeve, I’m reminded of what I’ve been through over the last year. I’m reminded that I’m never done with breast cancer, because every time I fly I have to put on that stupid sleeve. I’m reminded that life is uncertain. I’m reminded that life is fragile. I’m reminded that life is short. Sometimes too short.

Being on a plane now is a symbol for all that I’ve been through, all the I have left to do and all that I might not have time to do.

After my plane lands safely and I take off my compression sleeve, I’m relieved that I’ve survived – both the flight and breast cancer.

Sometimes…Reality Bites

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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.