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.

First Run Since My Mastectomy

This past weekend I went for a run for the first time since my mastectomy two years ago.

Before breast cancer, I was running 2-3 times per week. It was a great way to stay in shape and relieve stress. But after breast cancer, I was really scared to go running.

The nurse in my plastic surgeon’s office kept reassuring me that it would probably be easier to run now with implants, rather than real breasts. Less moving around, if you know what I mean.

It makes sense, but I was still worried. Implants are just balls of gel glued to my chest. I’m no Flo-Jo, so setting a world record for speed wasn’t and will never be in the cards for me. But couldn’t my implants fall off from running? OK, that’s probably not gonna happen. But my mind wanders to strange places these days.

So after two years of trepidation, I decided it was time to try it. Recently there have been some articles about how running beats walking for breast cancer survival, so that added to my motivation.

As I got dressed, I put on my compression sleeve, as my physical therapist insisted to prevent lymphedema. I think this is one of the reasons why I had been hesitant to start running. I hate wearing that compression sleeve. It doesn’t hurt, its just bothersome – physically and mentally. Its tight, as its supposed to be to work, but feels constricting.

And I know I shouldn’t care what people think when they look at me, but the compression sleeve is a reminder that I’m not like everyone else running. What I have to wear when I run is now different than what everyone else wears. I know I’m doing the right thing by wearing it, but I sure wish I didn’t have to. It’s just another reminder that you’re never done with cancer, even when you’re done with cancer treatment.

So I laced up my shoes, put my ipod on and headed out the door. It was a gorgeous day, the sun was finally shining and it was warm enough to be outside without a jacket. A perfect day for a first run.

I started out slowly. I walked a couple blocks while I gave myself a little pep talk. I can always stop running and start walking if my implants hurt. Or if I got scared. Getting out the door is usually the hardest part.

Once I started running, I actually felt great. I couldn’t believe it. The nurse was right – my implants didn’t move at all. It was easier to run with implants than real breasts. Imagine that!

I only ran for a couple miles, but for me at this point, it was like running a marathon. I deserved a metal, or at least a ribbon for participation.

YouTriedAt the end of my run I walked for a few blocks before going inside. As I walked, I started to cry. I was so happy to be doing something that I loved pre-cancer and was finally able to do post-cancer.

Being a breast cancer survivor is really hard – some ups and lots of downs. But running made me feel like not everything was taken away from me with a cancer diagnosis. It was the first time in two years that a part of me really believed there could be life after cancer.

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.

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?

I Asked For Less Doctors, Not More

I have a stubborn bump on my eye that won’t go away. It’s been there for almost two months but I just couldn’t seem to pick up the phone to make another appointment to sit in another waiting room to see another doctor.

Finally last week I went to see my primary care doctor about it. She looked at my eye and asked how long the bump had been there. I told her two months and she said I should have come seen her sooner, because now what she thought was a stye had hardened and I might need to have surgery to remove it. I knew that I should have visited her earlier, but the stye showed up as I was having my ovaries removed and I just couldn’t deal with one more thing.

After looking at my eye, my doctor told me that I should go see an ophthalmologist, since the stye had been there for two month. She gave me a referral, a prescription for erythromycin and I left the office.

I got into my car and immediately started crying. I know it’s just a stye. It’s really no big deal, right? But when I heard the word ‘surgery’, I immediately flashed back to my mastectomy. It was like PTSD. Something as simple as having a stye removed sent shivers down my spine and made me flashback to being in the hospital going under the knife. 2014 was supposed to be a surgery-free year. WTF!

So today I went to see the ophthalmologist. She was actually a wonderful woman who was very smart and caring. I sat down and she told me that what I have is not a stye, but actually a chalazion, which is a small lump on the eye. She said they’re most often caused by stress. She asked if I was experiencing any stress. I just laughed.

You mean the stress of having breast cancer? Or the stress of having a mastectomy? Or the stress of going through chemo? Or the stress of radiation? Or the stress of having my ovaries removed? That kind of stress?

Then she told me she was an 11-year breast cancer survivor. So she understood. She went through the same thing. Then she said, “there is life after breast cancer.” I smiled. I knew I’d have a good cry about that one later, in the privacy of my own home.

She gave me a prescription for steroid drops that she thinks will help make the lump go away. She said we could do surgery to remove the chalazion, but we should try the drops first, unless I wanted to do the surgery. I said, no thank you, I’ve had enough surgeries.

Fingers crossed that the drops work and I’m done with what is hopefully just a minor annoyance.

Could It Really Be…An Uneventful Doctor’s Appointment

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

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

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

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

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

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

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

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

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

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

Time For My First Doctor’s Appointment of 2014

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

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

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

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

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

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

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

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.

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!