Monday, September 28, 2015

"How DID you get sick, Mommy?"

To be honest, I'm surprised it took this long. Quinn is a pretty observant four-year-old. He'll often notice the expression on a truck's face in one of his library books and ask me why the truck is angry/sad/has "its face scrunched up like that." He's a master at those find the differences games in his Highlights High Five magazines. And last time I got my hair colored, I joked with my stylist that Quinn would probably notice before Chris. He's an astute kid.

As I was drying him off after his bath Saturday night, Quinn put his finger gently on one of my radiation tattoos, a pin dot in the middle of my chest.

"It's bluish-green, Mommy," and I waited to see what he would say next. Would I correct him if he called it a freckle? How much information should I give?

"How did that happen?" he asked, not quite what I expected to hear, the concern in his face breaking my heart just a bit, but also making me incredibly proud to be this perceptive, empathetic boy's mom. He knew it wasn't something natural.

"It's a tattoo," I said. And I showed him that I have at least three more, two under my armpits and one at the top curve of my right breast. He wanted to see if I had more on my back.

"No, honey," I told him. "There aren't any more."

He didn't ask anything else, so I didn't give him any more information.


Quinn and I are preparing for our trip to New York this week (still more on this as soon as I'm able!), for an event at which I've been asked to speak. (By preparing, I mean I've been doing laundry and he's been packing his coloring books and Hot Wheels cars.) I've been asked to share a bit of my breast cancer story at this thing, with Quinn by my side, so I've also been preparing by trying to let him know what to expect.

I've told him I got really sick when he was a baby. That medicine called chemo made me bald, and now I still get medicine to -- we hope -- keep me from getting sick again. I've told him I'm going to talk about that a little.

I haven't told him more because he's only four. I don't want him to know some things yet, if I can help it. I try to only answer the questions he asks. I'm trying to craft a short talk that's appropriate with him by my side but also conveys to a roomful of people the devastation of this disease. I also have chemo tomorrow, so I will be portraying a very real version of what life is like after a metastatic breast cancer diagnosis when I get up to talk two days later.

Please wish me luck.


Last night, Quinn and I were looking at pictures of when he was a baby, and came across a couple in which I am bald.

"How did you get sick, Mommy?" Quinn asked, a variation on a themeapparently.

"I don't know, buddy. They don't know that yet."

They don't know.

Wednesday, September 23, 2015

Where to Turn for Help After a Cancer Diagnosis

I've got a few things brewing over here, including an event that's taking Quinn and me to New York City next week (more on that to come) and the fact that I sent my completed manuscript to my agent last week (!!!) I'm excited to share all of this with you guys as it unfolds, and I hope with every ounce of my being that what I'm doing -- all of it -- is of service to the metastatic breast cancer community.

{here's a hint about our NYC trip}
As part of one of these initiatives, I was on the phone the other day with a woman who's working on a story about living with metastatic breast cancer for October, that loaded month, and she asked me whether I felt there had been enough resources and support services when I was first diagnosed.

Um, NO, is the quick answer.

But it got me thinking that I should write about the resources that have emerged and what I've found useful, in case it might help someone else out there. Have any to add? Please leave a note in the comments!
  • One major source of information was Dr. Susan Love's Breast Book,* which is now in its sixth iteration. I especially appreciate that this new edition includes an updated chapter on metastatic disease that offers some hope for emerging therapies and longevity. This book has been called "the bible for women with breast cancer," with good reason. When I was first diagnosed, I wanted to know as much as possible about the cancer inside of me, without the fear that can be brought on by "Dr. Google." Here was my answer, clearly laid out in the pages of this easy-to-read book. Fully indexed and written for the layperson, Dr. Susan Love's Breast Book takes a comprehensive look at breast cancer prevention, staging, treatments, pathology, and emerging research. In a field where new information is always emerging, this book offers a treasure trove of the latest data.

  • I have a love/hate relationship with support groups, both online and in-person. I love the potential of what they have to offer, but participating in them can be an emotional roller coaster. After all, you get close to people and in many cases, you have to face their worsening health or death. For awhile after my first course of treatment -- and every once in awhile since then -- I need a break to let my emotions recover a bit. When I was first diagnosed, a friend referred me to the Young Survival Coalition's Facebook support group. At the time, it was both a treasure trove of other women who were going through the same treatments as I was and a place where I didn't feel I completely fit in because there weren't many women with metastatic disease (fortunately). In the last four-plus years, I think YSC has done more to support metsters, but other groups targeted at young women with Stage 4 breast cancer have also emerged on social media. If you want to be added, find/message me on Facebook (link from the button on my blog). Note that there are fairly strict privacy rules on these boards. 
  • Speaking of social media, you may have heard me mention the Twitter chat with the hashtag #bcsm. This takes place on Monday nights at 6 PM Pacific / 9 EST. Topics range from the invisible scars of breast cancer to parenting with cancer to how to change the conversation around metastatic breast cancer. The chat is for all stages and ages, but is an excellent way to share information and find support. 
  • I have mentioned before how lucky I am to have the health insurance and access to care that I do, but I know everyone isn't so fortunate. I do think that the Affordable Care Act has made significant strides in ensuring access to care. I, for one, am relieved that I can't be denied insurance despite my poor health history. For assistance with co-pays and drug costs, check with the drug company providing your drugs. I know Genentech, the company that makes Kadcyla, has patient assistance programs to offer reduced-cost drugs to patients whose insurance doesn't cover the cost.**
  • On a similar note, the reason I walk in the Avon 39 Walk to End Breast Cancer every year is because of the programs they fund to provide everything from free screenings to women who can't afford them to meals to people who've been diagnosed with cancer. Obviously, services will vary depending on where in the country you are, but here are a few national organizations:
    • Cleaning for a Reason: "Our mission is to give the gift of free house cleaning for women undergoing treatment for any type of cancer. Our goal is to let these brave and strong women focus on their health and treatment while we focus on, and take away the worry and work of, cleaning their homes– free of charge." I reached out to this service early on in my treatment and they didn't have any partnered cleaning companies in Phoenix/Scottsdale, but they may be worth a try in your area.
    • Look Good/Feel Better: Because sometimes a little blush does make it easier to face the day.
    • Little Pink Houses of Hope: Offering family beach vacations/retreats for people directly affected by breast cancer.
    • First Descents: If you're feeling adventurous, First Descents offers surfing, rock climbing, white water rafting, and ice climbing (!!) trips for cancer survivors.
  • Other national organizations offer links to local support services. For example, the American Cancer Society has a location-specific searchable database for everything from free wigs to counseling/therapy. Living Beyond Breast Cancer is another excellent source of information, including a search function for clinical trials specific to metastatic breast cancer. 
  • Finally, I have heard excellent things about the Livestrong Foundation's fertility services, for those of us who've lost ours to cancer and/or cancer treatments.
What resources do you wish there were more of? What have you found especially useful? What have I left off this list?? And PLEASE let me know if you've gone on a surfing trip and/or family retreat -- I'd love to hear how that went!

* Dr. Love recently provided me with a free copy of this 6th edition, but I already had the 4th edition on my bookshelf. All opinions on the book are my own.

** One of my best friends works for Genentech, but I have not talked to her (or the company) about this post.

Friday, September 18, 2015

Here's to More Birthdays

Birthdays post-cancer are a funny thing. I mean, of course they're great and we want more of them, but being diagnosed with cancer doesn't mean you don't notice the lack of collagen as the years pass. Or get irritated by grey hairs you-know-where when another part of you remembers you should just be happy to have hair.

Cancer doesn't give you a free pass when it comes to being weirded out about all the things that happen as you get older. For example, I have what I thought was the makings of a pimple on my chin, but now I'm pretty sure is just an ingrown hair. On my chin. Why? WHY ARE HAIRS GROWING THERE BUT NOT ON MY EYEBROWS!!!

So, I'm ecstatic to have more birthdays but also not going to pretend I don't notice the fine lines around my eyes or the fact that I can't eat peanut butter straight out of the jar (sometimes with a spoon) without then having to get raised eyebrows from the nurse at my oncologist's office as he weighs me in and sees I've gained four pounds. Sigh. But also? I don't really care. Because you only live once, and sometimes peanut butter is worth it.

I'm talking about getting older because my 37th birthday was last weekend. Somehow, that makes FIVE birthdays since I was diagnosed with metastatic breast cancer. SO, YES, I HAD A CUPCAKE. And a bourbon drink. What can I say? I celebrated.

I celebrated with friends and my husband who arranged a small gathering at a local...speakeasy? Hipster dive bar? There was skee ball and air hockey (at least I think. Us parents sat and visited the whole time. We were just happy to have a night of uninterrupted conversations. Even though, sure, ninety percent of those conversations were about our kids.)

We were clearly the early crowd, arriving at seven and ordering menu items like charcuterie and arugula flatbreads. Then around 9:30 things shifted, and we were easily the oldest, quietest, least collagen-ed people in the place. I vaguely remember a time when Chris and I used to leave to go out for the night around 10 p.m. (Here's photographic evidence.)

{circa 2006, celebrating Chris's 30th birthday}
But last weekend, we were home by 11, in bed shortly after, and I was still tired for two days because of it. And here's where I don't know whether to blame cancer treatments or aging or possibly even just being a parent to a little boy who wakes up ready to run and wrestle and do all of the things at seven a.m. But life is short, so why not do all of the things?

Here's to more birthdays and more doing and more celebrating (but maybe less peanut butter).

Wednesday, September 9, 2015

What to Eat During Chemotherapy

I kind of can't believe I've had a blog about living with breast cancer for more than FOUR YEARS now, and I haven't done a post about what to eat when you're going through chemo. I don't think. If I already have, go ahead and chalk it up to chemobrain. I've done posts about that, right?

Hint about what to eat: it's whatever you can stomach. 

Right now, even the word stomach sort of makes me want to vomit. I had treatment yesterday, and even though I'm on antibody-drug conjugate -- a targeted chemotherapy delivery method that isn't nearly as bad as the broad spectrum drugs I used to receive (I'm talking to you, carboplatin and taxotere) -- there are still some side effects. I've talked about the fatigue. I've probably talked about the nausea in passing.

But I don't know if I've talked about any solutions.

Here's what works for me (sometimes).

Zofran and/or Compazine: This is not the time to avoid medicines that can offer serious relief, with the important caveat (and possibly too much information) that anti-nausea meds can cause headaches and constipation, so you may want to do some cost-benefit analyses.

Ginger: Trader Joe's carries a great Ginger Beer (non-alcoholic, don't worry) that works wonders for staving off the waves of nausea. They also have some ginger chews that help when nothing else seems to.

Water: It's about the last thing I want in the days after my treatment (think how terrible a tall glass of water sounds when you're hungover), but water, especially with electrolytes, helps flush your system and is one of the truest ways I've found to feel better faster. When I was on broad-spectrum chemotherapy, I resorted to -- gasp! -- Gatorade or popsicles when my mouth sores were out of control. I know, sugar is evil, but sometimes it's a necessary evil. Kind of like chemo.

Smoothies: Fresh vegetables sound downright repulsive in the days after treatment, as good as I know they are for me and as much as I know my body needs the vitamins and nutrients to heal. So I've jumped on the smoothie bandwagon and make a version many mornings of the week. Bonus: it's one of the only ways I've found to get Quinn to "eat" his greens. Win/win.

Green Smoothie
Serves 1-2

1-2 ripe bananas
large handful of spinach and/or kale leaves
generous splash of orange juice or almond milk
1/2-1 cup other fruit of choice -- pineapple, mango, apple, or a combination
ice cubes

Throw everything in a blender and blend until smooth, then adjust taste to your liking. Sometimes I add a scoop of vanilla protein powder or a handful of raw almonds.

Banana Bread Smoothie
Serves 1-2

1 c. almond milk (I like unsweetened vanilla)
1-2 bananas
1-2 Tbsp. almond butter
ice cubes

Blend until smooth. Top with grated nutmeg, if you like. I serve mine with a colorful straw because it makes me smile.

Comfort Foods: This isn't the time to be concerned about your diet. Of course you want to be as healthy as possible, but sometimes homemade mac-and-cheese or stuffed shells are the only things that sound appetizing. I will say beware of tomatoes and tomato sauces, especially on broad-spectrum chemotherapies that can alter your taste buds and leave you with mouth sores. Acidity is not your friend on those drugs. But some soft pasta in a homemade salty chicken broth with sweet bites of chopped carrots? That could get me through some terrible queasiness.

Medical Marijuana: (NB: I have not tried this because I am prone to anxiety, in the past marijuana has tended to bring out the paranoid in me, and I do not need more of that in my life.) I have heard though that medical marijuana can work wonders for spurring a person's appetite. I am in favor of whatever works so you can keep your strength through treatment.


If all else fails, remember this:

What are your go-to recipes when you're feeling hungover from treatment? Do you have any favorite cookbooks? What alternative solutions have you tried to ease your nausea (or other treatment-related side-effects)?

Friday, September 4, 2015

Around the Web: End of Summer Edition

Kids are back in school everywhere, it seems, based on all of the adorable Facebook posts of your kids holding signs about what grade they're entering. This is one of my favorite times of year on social media. Pumpkin patch season is next up, I think.

Anyway, here's my husband (a professor) with his take on the meme (and yes, this is how he typically dresses for work).

It's true: save for this weekend, summer's just about over (even if our thermostat begs to differ). And I owe you all some news. So here's the research I found around the web over the last couple of months. I wasn't just eating bonbons by the pool, you guys. Who am I kidding? I wasn't doing that at all, but a girl can dream.

Scientists Turn Cancer Cells Back to Normal, Could "Switch Off" Disease

WELL, THIS WOULD BE AMAZING. Clinical trials stat, please.

"For the first time, aggressive breast, lung and bladder cancer cells have been turned back into harmless benign cells by restoring the function which prevents them from multiplying excessively and forming dangerous growths.

Scientists at the Mayo Clinic in Florida in the U.S. said it was like applying the brakes to a speeding car.

So far it has only been tested on human cells in the lab, but the researchers are hopeful that the technique could one day be used to target tumours so that cancer could be “switched off” without the need for harsh chemotherapy or surgery."

No Surprise Here: Cancer Drugs Are Freaking Expensive

"[The report] goes on to matter-of-factly lay out the harsh financial realities many people face after a cancer diagnosis, a suite of diseases that will affect 1 in 3 individuals over their lifetime. While the cost of new drugs has soared to well over $100,000 a year, the out-of-pocket expenses patients are expected to bear have also gone up to 20 to 30 percent. Because of these costs, about 10% to 20% of patients with cancer do not take the prescribed treatment or compromise it."

So Here's to Generic Drugs!

"There's new evidence that two inexpensive generic drugs can improve survival rates for women who develop breast cancer after menopause.

In two large studies published Friday in The Lancet, a class of hormone-therapy drugs called aromatase inhibitors and bone-preserving drugs called bisphosphonates improved survival and recurrence rates in postmenopausal women with early breast cancer."

As if You Needed It: Another Reason to Quit Smoking

But none of my readers still smoke, right? 

"Among more than 800 women with breast cancer, those who had smoked for more than two decades had at least triple the odds of dying of any cause, or from breast cancer in particular, compared with women who never used cigarettes."

A "Glimmer of Hope" for Triple-Negative Breast Cancer Patients

"Using mouse models of triple-negative breast cancer, the team reduced expression of IL13RA2 in cancer cells. They found that lowering IL13RA2 was associated with much slower tumor growth, and the cancer cells were much less likely to spread to the lungs.
Based on their findings, Thiagalingam and colleagues believe IL13RA2 plays a role in the growth and spread of triple-negative breast cancer, suggesting the molecule may be an important drug target for the disease. Thiagalingam adds:

"This discovery offers a glimmer of hope for patients stricken with BLBC. Personalized cancer therapies could be developed by targeting breast cancer cells that express copious levels of IL13RA2."

What is more, the researchers say their findings could lead to treatment strategies for other forms of cancer involving high IL13RA2 expression, such as ovarian, brain, colon and pancreatic cancers."

And More Options for Her-2+ Patients (Like Myself)

"Treatment-refractory HER2-positive metastatic breast cancers are becoming increasingly rare due to the recent advent of multitargeted HER2 receptor blockade mechanisms that utilize novel antibodies and antibody–drug conjugates even as the roster of new therapies under study for this patient population continues to expand, according to Mohammed Jahanzeb, MD.

“The landscape is really shifting,” said Jahanzeb, a breast and lung cancer expert.

Jahanzeb said many novel agents including antibody–drug conjugates, bispecific antibodies, and immunotherapies are being evaluated for patients with recurrent disease at a time when outcomes are improving. “The field is very rich,” he said. “Actually, what is not so rich is access to these patients [for clinical trials]. Luckily for them, fewer are relapsing.”"

Further Evidence that Our Immune Systems Have a Role to Play in Fighting Cancer

"A cancer patient's chances of survival seem to depend partly on activity in specific genes and immune system cells, a new study suggests.

Using data from nearly 18,000 people who were treated for cancer, scientists found that particular patterns of gene activity corresponded to patients' survival odds -- across a whole range of cancers, including brain, breast, colon and lung cancers."

Another Novel Approach? Overstimulate Certain Cancer Cells to Kill Them

This is not yet available in a clinical setting, but researchers are optimistic.

"A drug candidate that overstimulates proteins crucial for tumor growth shows promise as a new strategy to treat a wide range of cancers. The demands of rapid cell division put a strain on cancer cells, and the approach works by tipping cell stress over the edge. In the August 10 issue of Cancer Cell, American researchers show that the drug candidate inhibits tumor growth in a mouse model of breast cancer and efficiently kills a broad range of human cancer cells.

"No prior drug has been previously developed or proposed that actually stimulates an oncogene to promote therapy," says co-senior study author David Lonard of Baylor College of Medicine. "Our prototype drug works in multiple types of cancers and encourages us that this could be a more general addition to the cancer drug arsenal.""

Blood Test Could Predict Breast Cancer's Return

I'm not sure if I'd want this, for the same reasons I won't go see a psychic. Would you get the test?

"An experimental blood test may be able to predict whether a woman with breast cancer will suffer a relapse months before new tumors would be detectable on scans, researchers said Wednesday.

The technology, described in the journal Science Translational Medicine, works by detecting cancer DNA that circulates in the bloodstream.

While the test is not yet available to the public, and likely will not be for years to come, researchers are hopeful that it could help refine personalized treatments for cancer and perhaps lead scientists further down the path of finding a cure one day.

"We have shown how a simple blood test has the potential to accurately predict which patients will relapse from breast cancer, much earlier than we can currently," said study author Nicholas Turner, team leader in molecular oncology at The Institute of Cancer Research, London."

Tuesday, September 1, 2015

What I Wish I'd Known When I Was First Diagnosed

A few months ago, after being asked for the umpteenth time what advice I'd give to someone newly diagnosed with advanced breast cancer, I reached out to pose the question to the women in my online support groups.

I can never think of just one answer to this question. I say things like:

  • Be your own advocate.
  • Ask for help from those who love you. 
  • Try to make the most of each day, even when you feel terrible. 

But it never feels like quite enough. So here's what other women who've been down this rough road have to say on the matter.

{photo credit}
Find support! Cancer is hard and stage 4 is even harder. I always suggest -- Jenny

Prioritize carefully. -- Jimmie 

I've been sitting here for 15 minutes, trying think of some all-encompassing wise thing to say, and I've got nothing. But I fully agree with "find support". I was completely unaware that groups like this existed for the first 8 months of my diagnosis. I wish I'd been able to connect with other stage IV women sooner! -- Marisa

I have nothing profound. I tell them: 1. Breathe 2. Worry when you have to 3. One day, one step at a time. -- Leslie

The only thing that I can think of is Do Not Stop living your life. What you loved doing before do it after the diagnosis. -- Chantal

get rid of drama (including people)....simplify.....and live your own truth, your way, in your time. This is no one else's life but yours. -- Lesley

Don't look at statistics, don't read negative stories. Everybody has their own race to run, and many of us live a long time with mets. Mine is liver and I'm 6 years and going strong. Not without some seriously rough patches - but you never know if you'll be in that category. Live your life, enjoy your days and try not to live in the future. -- Ann

Learn to advocate for yourself. -- Karen

Don't be afraid to ask your doctor to prescribe something for anxiety. The first few months are really hard. Allow yourself to grieve, but not forever. Surround yourself with people who lift you up and find things that make you happy. -- Donda

Something for anxiety AND a sleep aid. -- Susan

Each day is a gift no matter your circumstances. And really thinking that everyone is terminal in a sense helped me as well. No one really knows how long they have, no one! -- Emily

I always stress the second opinion and finding Doctors you have full confidence in. -- Colleen

Don't just try traditional medication. Go Asian, drink juice, exercise, and pray...pray like never before! -- Melanie

LIVE, LAUGH, LOVE, each and every day, I am. -- Theresa

Get copies of the pathology reports, join an online group such as this one, and ask how long people are surviving with this disease, particularly those with similar dx. You may be looking at several years rather than months. It took a long time to understand that at first. -- Theresa

Keep meticulous records of drugs & reactions. You may end up on the same drug again in the future. Always get a copy of your scans on a disk. Keep all reports, especially pathology! -- Lynn

The first year will most likely be the most difficult for acceptance/denial. Look into disability benefits early and start making fun plans! -- Bethany

There is life after the diagnosis, and it's possible to live a good life despite the prognosis. We are not a statistic, and don't ever think that you will fall into the stats. Day by day, moment by moment, relish it and enjoy the little things...always find a snippet to your day that brings a smile to your face. Cancer will not define me as a person, but it will enhance the way in which I choose to live. -- Judit

Ignore all statistics. I have been enjoying a good quality of life for 4 yrs, still working, traveling, having fun. Everyone has a different cancer journey. But, the first year is definitely the hardest! -- Donna

Mine to share would be to "Expectations breed present!" Finding yourself and trusting yourself is very liberating. -- Wendy

You MUST be your own advocate. -- Jody

Be your own best advocate. Research, read and ASK QUESTIONS!! -- Tricia

I'd tell them it is not over. Keep going, keep getting out of bed everyday and trying. It is possible for women to live several years with Stage IV cancer. -- Jaymi

Absolutely be your own advocate AND remove all negative people from your life. -- MaryAnne

We never have another chance at today, so make the best of it! -- Catherine

I would recommend getting multiple opinions on route of treatment. It is hard to not want to rush into something, but a second opinion on how to get started can help set your mind at ease (I ended up waiting 4 months for a second opinion and wish I had done it at first). -- Mandi

LIVE every day! -- Kelly

Find a doctor you love and trust. It makes the ride less horrible. -- Beth

Get a therapist if you don't have one already. Metastatic disease takes you to dark places; you need someone who will not only go there with you, but who will remember to bring the flashlight so you can both come back again. -- Kathleen

Take a deep breath and a step back. Your life isn't over yet. Live each day to the fullest. If you can do a happy dance then DO IT WELL and if all you can do is lie and feel weak then it's time to read that book you've been meaning to or watching a good comedy. Get your paperwork in order but don't pay the undertaker just're probably going to be around much longer than what you think. -- Annelie

I would add to make sure you have a great support system around you. From family to friends to medical to other supports. -- Laura

Don't panic. -- Anne

BREATHE! -- Jessica