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.

When Is My Brain Coming Back?

My brain still isn’t working like it used to. I’m not sure if its chemo brain lingering, or my mind trying to get back to fully functional, or something telling me to take it easy.

BRAIN-AT-WORKWords come to me slowly. In fact, sometimes they don’t come to me at all. And I’m not talking about complicated words. The other day at work, I couldn’t think of the word chair. CHAIR! I had to act it out to my co-worker, like we were playing charades. Could have been funny at a party, but during a work meeting…not so funny. Luckily my co-workers are also friends, so they were quite gracious with me. It was another daily reminder of what I’ve been through from breast cancer and how my brain hasn’t gotten back to normal yet.

Before I started chemo, I talked to many women who had been through what I was about to go through. One of the things they told me was that their mind still hadn’t gotten back to fully functioning. Some of these women were 3-5 years out of treatment. They said they couldn’t multi-task like they used to. And that their concentration wasn’t as good either. I thought they were being dramatic. And I thought, oh, that won’t happen to me. Well…here we are.

I’m trying to be patient. Next month marks my one year anniversary of finishing all my treatments. Everyone reminds me that it takes a while for the body and brain to get back to 100% functionality. I’m hoping that magically a switch is flicked in my brain that makes it work again at the one year mark. Patience with myself is not one of my strengths. Another stupid lesson to learn from this ordeal.

There’s a saying in the cancer community – “the new normal” – how to navigate your life after diagnosis and completing treatment. But I’ve come to see that my new normal is actually more like the new brain.

I’m sure there’s a more sophisticated word to describe how I feel about this new brain, but the only thing that comes to mind is UGH!

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.

I Dream of Getting Old

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

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?

Heavy Mortality Thoughts Today

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.