Tag Archives: Health

Another Birthday, Another Cancerversary

Posted on by
5

The cancer roller coaster was in full swing this weekend.

Saturday was my 42nd birthday. I had a lovely day celebrating by having some friends over for brunch. It’s exactly how I wanted to spend my day – eating the food I love with a few people I love and love me dearly.

Over the last 3 years, I’ve learned to spend more time doing what I want to do and say no to the things I don’t want to do. And that’s what this birthday was about.

Then Sunday was my three-year anniversary of being diagnosed with breast cancer. This year’s anniversary was a bit easier than last year. I feel more stable these days, more like my pre-cancer self. I’m feeling good, exercising regularly, traveling, going out with friends, staying up past 9 p.m. (watch out!)

Having said that, I know all too well not to get conceited with cancer. Yes, I’m grateful that I caught my breast cancer early and have survived. But early detection doesn’t always mean a lifetime of survival. Women (and men) survive breast cancer in the breast. When breast cancer spreads to other organs, or metastasizes, that’s when people die of breast cancer. And as I’ve learned from my research and Twitter friends, 30% of early stage breast cancer returns as metastatic breast cancer. There’s currently no cure for metastatic breast cancer. And only 2% of funding for breast cancer research goes to metastatic breast cancer research. That’s gotta change, for all of our sakes.

I’m painfully award that breast cancer will follow me around for my lifetime, with both physical and mental scars. I don’t think I’ll ever be ‘done’ with cancer, whether that’s in the metaphorical sense or the literal sense. But I hope I’m one of the lucky 70% where my early detection doesn’t return with a metastatic stage. I’ll keep my fingers crossed on that.

So for now I’ll celebrate these important anniversary milestones. Birthdays are, by definition, a celebration of live. I always loved my birthday, and now it takes on even more meaning for me. Another year with my family and friends. Another year of making my dreams come true. Another year of good health. These are no small victories.

So while everyone else complains about the grey hairs during their birthdays, I’m grateful to have more time to do the things I still want to do and to grow old.

My First Breast Cancer Conference

Posted on by
2

This past weekend I went to the Young Survival Coalition (YSC) 2015 conference in Houston. It was my first time ever attending a breast cancer conference. And I had mixed feelings about it.

Over the last three years since my diagnosis, there are moments where I still can’t believe this is my life. How am I a breast cancer survivor? How did this happen? I ate right. I exercised. I got enough sleep. I didn’t eat a lot of sugar. I did yoga. I did everything I was supposed to do. Although I now know that my breast cancer happened by a combination of bad genes and bad luck, I am still overwhelmed at times by the feeling that I wish it never happened.

As the conference went on, I met several other young women survivors that were both smart and inspiring. They knew their stuff about breast cancer. And they were there to help each other. Each year, only 13,000 young women (40 years old and younger) are diagnosed with breast cancer. So this gathering is important to us young women so we don’t feel alone. Also so we can talk about issues that are specific to young women, that older women don’t have to deal with.

One of the highlights of the conference was listening to amazing speakers. Two of my favorite were Dr. Susan Love, breast cancer surgeon, advocate and author, and Dr. Don Dizon, gynecological oncologist.

I’ve been a fan of Dr. Love’s since my college days as a women’s studies major. Every women’s health class I took talked about her work. And she did not disappoint at this conference.

Dr. Love spent a lot of time talking about collateral damage from breast cancer – meaning the physical and emotional damage from treatment. Dr. Love went through treatment for leukemia in 2012, so she knows first hand what she’s talking about.

One of the most profound slides from Dr. Love’s presentation was the difference in how doctors see us as patients and how we as patients see ourselves.

Embedded image permalink

Dr. Love also talked about the bullshit of pinkwashing. There’s nothing pretty about breast cancer and in my opinion, the ribbon should be black not pink. And most of the money that is raised from pink products doesn’t actually go to breast cancer treatment or research. It’s time to move from awareness of pink products to a cure for this horrible disease that kills too many women (and men) each year.

Dr. Love closed her speech by saying, “I want to find the cause of breast cancer and end it.” The room erupted in cheers. No one else should have to go through what all of us survivors have gone through in that room.

Dr. Dizon spoke about breast cancer as a disease and the research, both of which are complicated. There are many different types of breast cancer and many different treatments. There’s no one size fits all.

Embedded image permalink

We know that 1 in 8 women are diagnosed with breast cancer. But Dr. Dizon reminded us that statistics are irrelevant when you’re the one diagnosed. And breast cancer doesn’t kill because of a tumor in the breast, but where it spreads from there.

Dr. Dizon closed his speech by saying, “We must never stop pushing for what we want. We must never stop pushing for what we can do better. Our lives and our loved ones’ lives are at stake.” So well said.

Another memorable session was on fitness and nutrition. I’m pretty serious about both my fitness and nutrition, so it was great to have all my habits reinforced. Sami Mansfield, an oncology exercise specialist, spoke on these topics.

Sami talked about the importance of good nutrition, and that the Mediterranean diet is the best. No news there, but good reinforcement.

photoSami also discussed how estrogen lives in fat. So since my breast cancer is estrogen positive, meaning my tumor fed on estrogen, keeping estrogen lower in my body is key. Therefore keeping my body fat low is important.

One thing did surprise me about Sami’s talk. She said that a new study came out which showed that breast cancer survivors no longer need to wear a compression sleeve when exercising or flying to prevent lymphedema. This was SHOCKING. My physical therapist was more than insistent on this. So I’ll be following up with him this week. Although I do wear my compression sleeve without fail, it does make me want to exercise less. Wearing that sleeve is just a constant reminder of what I’ve been through with breast cancer. If I could have one less reminder, that would be great!

The last highlight from the conference was the session on advocacy. Of course it included the great Dr. Love. She reminded us that we need more wild ideas if we’re going to get rid of breast cancer. Dr. Love proceeded to tell the story of how the HPV vaccine was discovered at the National Cancer Institute (NCI) while there was a woman as the director. If it weren’t for her leadership, cervical cancer wouldn’t have almost entirely been eradicated. We need the same thing for breast cancer. It just so happens that Dr. Harold Varmus stepped down from NCI earlier this month. It’s time for another woman to head NCI and end breast cancer in my generation’s lifetime.

After this session, a petition was created to do just that – nominate a woman to head NCI. You can sign it here.

All in all, it was a great weekend. I’m grateful to YSC for putting on such a wonderful conference. I connected with friends from my support group and made some new friends. Got great reinforcement that my doctors are on top of their ongoing surveillance of me and I’m in good hands. And most importantly, was reminded that I’m not alone.

photo2

A Constant Reminder of Loss

Posted on by
3

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.

 

Tighter and Longer Hugs

Posted on by
5

This past week I visited friends in San Francisco I haven’t seen in over 4 years. Everything in my life was put on hold during my year of treatment for breast cancer. Last year I finally had enough energy to think about traveling across the country. But then my stupid ovaries had other plans, and I had to cancel that trip to have an oophorectomy.

Not wanting to jinx anything, I couldn’t seem to rebook my trip in fear of something else happening. Well, after several uneventful months with no health news, I made some plans to finally take that cross country trip.

I was excited but a bit nervous before I left.

Was I going to be overwhelmed by emotions when I saw all these friends?

Was I going to have the stamina and energy to see everyone I wanted to see?

Would it be too uncomfortable for people to hear an honest account of what being a breast cancer patient and survivor is really like?

Once I arrived in San Francisco, I caught up with a lot of dear friends and this anxiety quickly faded away. I’ve been very lucky in my life to be surrounded by caring, thoughtful and kind friends. And this trip only emphasized this fact. I don’t know if its our age, or my cancer diagnosis, but conversations with these friends this past week were deeper and more heart-felt than ever. Everyone wanted to know how I was doing. How I was really doing.

How does my body feel?

How does it feel to have breast implants?

Is my chemo brain still lingering?

Is my energy level back?

How is my mental health?

Is my life getting back to ‘normal’?

Is it possible to get back to ‘normal’ after a breast cancer diagnosis?

I had dinner one night with a dear friend who is also a breast cancer survivor. We were friends before either of us got diagnosed and now we’re even closer, having both gone through the trauma of breast cancer. I told her that although life is getting back to somewhat normal, I live with what I like to call the ‘new shitty normal’ because of breast cancer. My life changed, and not because I wanted it to but because of cancer. And these changes were not temporary, but permanent. No more explanation was needed for this friend. She understood what I meant.

All of the conversations last week with friends meant so much to me. There were lots of teary moments. Nothing in life is guaranteed, and we all know that. But when it hits that close to home, you really get it. My friends all really got it too.

So while I left for San Francisco feeling nervous and a bit anxious, I returned home feeling so grateful to have amazing friends in my life. And when I said goodbye to these friends after our visit, we hugged each other a littler longer than usual and a little tighter than usual.

And that felt great.

Last Chemo – Two Years Ago Today

Posted on by
5

Two years ago today I completed my 8th and final chemo treatment for breast cancer. Some days it feels like so long ago. But most days it feels like just yesterday.

My hair has grown back. It’s short, but no longer looks like I’ve been through chemo.

My energy has come back, for the most part.

My chemo brain still lingers, but no where near what it was during active treatment.

I’ve even gotten used to my new breasts. But I have to say, I don’t think I’ll ever get over loosing my natural breasts. Fake breasts just aren’t the same. For so many reasons.

While I’m grateful that I’m a ‘survivor’ (I hate that word, but that’s a blog post for another time), a day doesn’t go by that I don’t think about all I’ve been through in the last two years. It’s hard to move past a breast cancer diagnosis when you’re reminded of it every morning when you get dressed and see the mastectomy scars.

I do feel like I’m acting more like my pre-cancer self – going out with friends, regularly exercising, taking trips, not completely freaking out every time I feel an ache and pain. But as most people feel who have had a cancer diagnosis, the fear of recurrence is always in the back of my mind. You try to live as much of a normal life as possible, but it’s sometimes hard to quiet those dark thoughts in your head.

In the last two years since finishing chemo, I’ve joined a support group through the Young Survival Coalition. This organization focuses on supporting young women – 40 and under at diagnosis – with breast cancer. It’s so helpful to talk with other women who have gone through and are going through similar experiences as you. It makes me feel less alone and more understood.

I’m also trying to pay it forward a bit. There are newly diagnosed women that come to the support group every month. I remember how I felt at that time – scared, worried, nervous, anxious, etc. So I try not to sugar coat it and to tell these young women that breast cancer sucks. But I also tell them that we’ll be here to help her through it. Sitting and listening was the best help for me, so I’m trying to do the same for these women.

As I mark another milestone of one more year past my last chemo treatment, I’ve noticed that I’ve made other changes in my life too. Some are deliberate, some just happen after going through a traumatic event. I find myself spending less time doing things I don’t want to do. More time with people I want to be with. Going to places that have been on my list to visit. I used to be a person that read magazines cover to cover. Now if there’s an article I’m only mildly interested in, I’ll turn the page. No time for that now. Even if I am lucky enough to be alive for 50 more years, that’s a good life lesson, cancer or no cancer. I just wish I didn’t have to be diagnosed with breast cancer to learn it.

And Now … Osteoporosis

Posted on by
8

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

Posted on by
Reply

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

When Is My Brain Coming Back?

Posted on by
Reply

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

Posted on by
3

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

I Dream of Getting Old

Posted on by
5

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.