About atruejourney

I was diagnosed at age 39 with breast cancer. I spent a year going through 2 surgeries - a bilateral mastectomy and reconstructive surgery - 8 rounds of chemo and 7 weeks of radiation. It was a long year but I made it through. Now, I'm figuring out how to navigate my life as a breast cancer survivor. I find it to be quite the roller coaster. There are a lot of blogs about going through treatment for cancer, but not a lot that I've found about living as a survivor. That's what I'll be writing about here.

Another Birthday, Another Cancerversary

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.

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My First Breast Cancer Conference

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.

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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.

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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.

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A Constant Reminder of Loss

When was the first day of your last period?

That’s the question the nurse asked me at my annual gynecological exam on Friday.

Here’s what I said: I don’t get my period anymore.

Here’s what I wanted to say: I don’t get my period anymore because I had to have my ovaries removed after I went through treatment for breast cancer. I have the BRCA2 mutation, which increases my risk for ovarian cancer. So, no, I don’t get my period anymore and I’m in menopause at the age of 41. I know its not your fault, and I’ve never met you before so you’re probably new, since I’ve been coming here every few months over the last 2 years…but shouldn’t that detail about no longer getting periods be in my chart? What’s the point of having a chart if no one looks at it before talking to me?

Prior to this question from the nurse, I had been sitting in the doctor’s waiting room for 30 minutes with a ton of pregnant ladies. Me with my no ovary womb and them with their big, beautiful bellies. Me empty, them full. Literally and figuratively.

At every doctor’s appointment do I have to be reminded of this? I still see one of my doctors every 3 months – either my gynecologist, my oncologist, my breast surgeon, my plastic surgeon or radiation oncologist. That’s a lot of doctors and a lot of times having to reiterate my history to a nurse: I was diagnosed with breast cancer at 39. I had a double mastectomy. Then 8 rounds of chemo that lasted 4 months. Then breast reconstruction surgery. Then 32 rounds of radiation that occurred every week day for 7 weeks. Then, just when I thought I’d get a break from cancer, the possibility of ovarian cancer crept up during my bi-monthly screenings of my ovaries. So I had to have another surgery to do a biopsy of my ovaries and decided it was just time for my ovaries to be removed.

It’s difficult to move on with my life when, at every turn, something or someone makes my forward progression pause or take a step back. I know I won’t every really be able to put cancer behind me, and I actually don’t want to forget about having cancer and surviving, but does every doctor’s appointment have to bring something up that reminds me of what I’ve lost?

It’s hard enough to be going through early menopause – hot flashes, interruption of sleep, weight issues, achy body. Do I also have to be reminded of what I’ve lost from cancer? I’ve lost both of my breasts, I’ve lost both of my ovaries, I’ve lost the carefree lifestyle that made me believe I’d live to be 90, I’ve lost my patience and my ‘let’s wait and see’ approach to life, and I’ve lost my ability to have biological children and breastfeed them.

So, when was my last period? November of 2013. Maybe the next nurse could just skip this question and go to the next one on the list.

 

Tighter and Longer Hugs

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

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.

A Change of Perspective

I’m a little behind on my blogging lately. I’ve been busy doing fun things. What a nice change from being tired as a result of cancer treatments and doctors’ appointments.

Last month, I had my first infusion of Zometa. Zometa is a bone strengthening drug, which also has shown to prevent recurrences of breast cancer in some studies. My oncologist wanted me to do this treatment since in July of this year, I was diagnosed with osteoporosis in my spine. Yes, the joys of breast cancer continue.

I was pretty bummed about having osteoporosis, but even more bummed about the treatment, since the drug is administered in the chemo area of the hospital. I never wanted to be back there. Ever.

My oncologist told me I could expect flu-like symptoms the first couple days after the treatment. So I scheduled the infusion for a Friday, giving myself the weekend to recover. It felt like chemo all over again – figuring out when my body would have the worst reactions to treatment and how long it would take to recover.

So I went to the hospital, as early as possible, to get it over with. The sooner I got there, the sooner it would be over. They start infusions at 9 a.m., so that’s what I did.

The nurses were so nice, as usual. I feel very grateful to be so well taken care of. Not everyone has that experience.

The infusion didn’t hurt at all. I barely even noticed the needle going in or out. I guess I’m just used to that by now. They started the infusion, I turned on my iPod, closed by eyes, and 5 songs later, it was over. As my oncologist promised, the infusion only took 20 minutes. The whole thing took about 45 minutes. Couldn’t wait for it to be over.

I went home and laid on my couch. I was pretty exhausted. Of course I didn’t sleep the night before. The first time I do anything, I’m always nervous. So getting rest that night didn’t really happen. The emotional toll was worse than the physical toll for this treatment.

My oncologist told me to drink a TON (her emphasis) of water. Zometa is flushed out through the kidneys. So water gets it out of the system. I spent the day on the couch, in and out of napping. I did get this souvenir from the infusion – a lovely bruise on my arm:

Bruise From Zometa Infusion

The next morning I woke up, feeling pretty tired still but not terrible. No flu-like symptoms yet, but I decided to stay in to rest and keep drinking that water.

Around 8 p.m., I decided to go to bed early to catch up on that sleepless night the night before the treatment. But that’s when the flu-like symptoms showed up. I started to get some chills and feel a bit nauseous. I actually haven’t felt cold in a long time. Hot flashes and overall heat is my normal body temperature these days, thanks to Tamoxifen and my oophorectomy (the removal of my ovaries). So in a weird way, it felt kind of nice to be cold. The nausea though, I could do without that.

The flu-like symptoms only lasted for a couple hours. As I laid in bed eating ginger to help settle my stomach and with a wool hat on my head to try to warm up, I kept telling myself, “You’ve been through worse. This is nothing.” It actually kept me calm and helped me not freak out about what was happening with my body.

Not that I really needed it, but the Zometa infusion and my body’s reaction was a reminder that I’ve been through the ringer in these last 2 years – a double mastectomy, 8 rounds of chemo that lasted 4 months, 1 reconstructive surgery, 32 zaps of radiation over 7 weeks (5 days a week), an oophorectomy, and countless tests and doctors’ appointments. My perspective has changed. A little chill and nausea for a couple hours? No big deal. I can handle that.

So, I snuggled with my dog Murphy for some body warmth and TLC. Then next thing I knew, the chills and nausea were gone and I went to sleep. Another cancer experience that I’m happy to be moving past.

 

And Now … Osteoporosis

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

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

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

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

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

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

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

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

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

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

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

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

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

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