A Request for Rainbows

My friend in hospice died last week.

My heart hurts.

I'd met Renee at a support group meeting just over two years ago. At the time, she was in her first round of treatment for early-stage triple negative breast cancer. She had a new baby, so we bonded over being diagnosed so soon after our pregnancies. I was sporting a cute pixie cut then, being six or seven months out from my first round of chemo. She was excited to see how quickly her hair might start to grow back.

{"Prayer Bear" made by Renee}

Last summer, she sent me a note telling me her cancer had recurred, in her lungs. With triple negative breast cancer, treatment options are limited. Hormone suppression doesn't work because the tumors aren't fueled by hormones. Targeted treatments like the ones I've been on aren't effective because the Her-2 receptors aren't over-expressed like mine are. There is chemo, there is surgery, and there is radiation. And while there are lots of different types of chemo, when one stops working, the next is less likely to work, until none do.

Renee died the day after I met with my oncologist and he told me that if my clean scans continue for another year, we might be able to think about taking a break from my medication. It's a huge maybe. A lot can happen in a year. But the possibility exists.

And yet. My heart hurts.

I made lasagna and took it up to Renee's husband and little girls on Tuesday, because food is what you take to those who are grieving, right? But even as I spoke with him in hushed tones about how he was holding up, about how his girls were (as the oldest one played in the other room and the younger one napped), I mentioned that the gesture seemed empty. A pan full of food wasn't enough, but what could be? He told me his oldest daughter cries for her mom every night. Lasagna can't fix that.

My mom was here visiting, so I left Quinn with her while I went up to visit Renee's family. Her mom was also visiting, helping with food and laundry and caring for those girls in the wake of losing her own daughter. I couldn't help but think of what my mom -- my family -- would go through if I died.

People talk about survivors' guilt, and it's not that, exactly. I don't feel guilty, so much as hollowed out, utterly gutted by each loss. And scared. I am scared of dying of cancer.

I wailed as I drove away from Renee's house. I miss our late night chats -- about how we'd be the anomalies, the ones to watch our kids grow up, the ones to survive twenty years with this diagnosis. The end came quickly for her, so there's mercy in that. Things were going relatively well, and then they suddenly weren't. A month later, she was gone.

Wailing seemed appropriate.

Renee called me a few weeks before she died, from the hospital. She told me she was at peace with whatever was coming, and I remember feeling disappointed. Please don't give up, I wanted to beg her. But what do I know about where she was coming from? I have not been steps away from hospice. I have not been on four different chemotherapies in a year, only to have progression into my brain. I have not been where she was, faced quite the anguish she must have been facing.

And I know she didn't give up so much as let go. There is a difference. There is only so much a body can handle. I wanted to hug her, wrap her in love and let her know everything might be okay. Which I guess is what she was telling me when she called me that day. She was going to be okay.

Still, my heart. It hurts.

Another friend sent me a note last week to let me know her dad's cancer treatment was changing, and also that a mutual friend's cancer was back. It was a rough week, even with my good news. Is it just me? Is cancer everywhere in your world right now, too? I hope it's not as ubiquitous as it seems from my perspective.

My scan was clean. I am absolutely grateful for that. One friend told me, "Well, you're the rainbow!" Perhaps there's some of that. But I could use some more rainbows, if you've got them? Some more good news to balance some of this grief?

My heart could use it.

Around the Web

Despite my clean scan, it was a rough week in my cancer world (more on that later, but as one close friend of mine put it, "I'm feeling really oppressed by cancer lately.") I'm still sorting out my feelings from all of the news and my appointment with my oncologist. In the meantime, here's what caught my eye on the Internet this week.

"Panel Laments Lack of Options for Advanced Breast Cancer" (As Do Advanced Breast Cancer Patients)

"The lack of options for advanced breast cancer has created a sense of urgency for high-quality research and clinical trials to address a multitude of unanswered questions, a guideline panel concluded.

Though treatment advances have extended the duration of survival, advanced breast cancer remains almost uniformly fatal."

But at least there's a sense of urgency for high-quality research.

Meditation May Help Heal On a Cellular Level

Excellent timing for that meditation group I just joined today. 

"Now researchers in Canada have found the first evidence to suggest that support groups that encourage meditation and yoga can actually alter the cellular activity of cancer survivors.

Their study, which was published in the journal Cancer last week, is one of the first to suggest that a mind-body connection really does exist."

And Not to Go Total Hippy, But There Was This, Too

(How cannabis was used to shrink an aggressive brain tumor.)

"Our results showed that the dose of irradiation we used had no dramatic effect on tumour growth, whereas CBD and THC administered together marginally reduced tumour progression. However, combining the cannabinoids with irradiation further impeded the rate at which tumour growth progressed and was virtually stagnant throughout the course of the treatment. Correspondingly, tumour sizes on the final day of the study were significantly smaller in these subjects compared with any of the others."

Understanding Anti-Estrogen Resistance

Potentially groundbreaking research out of the Department of Defense.

"Dr. Cook's research suggests the potential for clinical benefit for patients with ER+ breast cancer by combining HCQ with anti-estrogen therapy. An ongoing BCRP-funded clinical trial (www.clinicaltrials.gov; NCT01023477) examining the effect of tamoxifen and HCQ in ER+ breast cancer may provide further clinical evidence to support this new treatment modality."

And a Potential "Kill-Switch for Cancer" From the Department of Energy

"A study conducted in part at the Department of Energy’s SLAC National Accelerator Laboratory has revealed how a key human protein switches from a form that protects cells to a form that kills them – a property that scientists hope to exploit as a “kill switch” for cancer."

Bringing Awareness to (and Removing the Stigma from) a Lung Cancer Dx

{photo credit}

"Tori Tomalia, a mother of three young children from Ann Arbor, Michigan, was diagnosed last year with stage IV lung cancer. She was only 37.

“I actually thought it was impossible for a nonsmoker to get lung cancer at my age,” she told NBC News."

Tori is a friend, and I'm thrilled to see her doing so well. November is Lung Cancer Awareness Month.

The Busiest People Ever

"We are the busiest people EVER!" Quinn announced the other day.

We were driving home after preschool pick-up, and I'd asked him about his day. As usual, he told me he "played and played and played!" And then, in an adorable pattern I've noticed lately, he's starting to ask things like, "How are YOU, mom?" or "How was YOUR day?" Our conversations are becoming two-way streets, even if those roads often lead to tales about dragon-sauruses who've turned into trolls.

I told Quinn I'd had a "doctor's appointment" (my CT scan), lunch with my friend/book editor, and that we'd gotten good news that day. Just in case you're not on FB/Twitter/within a few blocks of my home where I spent Monday squealing like an excited pig over the news, my oncologist called with my scan results: it was clean. This marks one year of No Evidence of Disease.

We celebrated as a family Monday night, cheers-ing our glasses of wine to Quinn's milk. The twitching in my right eyelid that's been plaguing me since mid-day Sunday has almost stopped. For now, I'm taking a break from my nightly dose of Xanax.

But I've been circling back to Quinn's comment about how busy our lives are, and wondering if we're over-scheduled. I try to give us ample downtime (see: days in front of the TV post-chemo), but I also try to accommodate Quinn's requests to spend time with friends, introduce him to new activities, and maintain a semblance of routine. We still go to swimming once a week. We just planted our fall garden, since that's what you do when it's still 85 degrees outside in November.

On Tuesday morning, we went to our friends' house, where we walked to the nearby Veteran's Day parade. That afternoon, another friend dropped her son off for a few hours so she could make it to a meeting (school was closed). By bedtime, Quinn was fried, and it showed.

I laid down with him as he fell asleep, a habit we're still clinging to. He wrapped his arms around my arm, holding my hand to his chest as he nodded off. My heart tightened. We try to protect him against everything I'm going through, to keep our anxiety away from him, to not talk about potential outcomes around him, but it's impossible for some of it not to seep into our daily lives. And kids pick up on so much. This strong, brave boy, who is exhausted from the hectic flow of our lives, has already had to know too much, sense too much, experience too much.

So, with my good news and the holidays approaching (because when could be a better time for trying to slow things down, amiright?), I'm going to work on making our lives slightly less busy, slightly less anxiety-ridden, slightly less scheduled and see what happens. The flip side of that coin is I'm looking at adopting a dog, though, so maybe we will still be the busiest people ever, just with more slobbery kisses.

Around the Web

I had a CT scan this morning, so now I wait. The official line that the technician gave me (and all the patients he sees, I suspect) is that it'll take two to three days to hear from my doctor's office. If I'm lucky, my oncologist will call earlier than that (if I'm luckier still, with good results). I'm meeting with him Wednesday morning, so in any case, I'll know by then.

As my friend Joanna reminded me, as a wise man named Tom Petty said about waiting...

A Device for Watching Metastases IN REAL TIME

This both fascinates me and terrifies me at the same time (knowing it is what happened in my body). But kudos to the scientists who are making it possible to better understand this process--and, ultimately, how to stop it.

"This close-up view allowed the pair to see that the tissue attempted to surround and contain the cancer cells. Unfortunately, some of those cells escaped and began to burrow in to a vulnerable point along the vessel. After a while the force from the artificial bloodstream was great enough to pull the cell into the vessel completely and flush it along."

Whatever Your Thoughts on Mammography, There's No Denying Its Cost

"Medicare-funded breast cancer screenings jumped 44 percent from $666 million to $962 million from 2001 to 2009, yet those added costs did not improve early detection rates among the 65 and older Medicare population, according to a Yale School of Medicine study published recently in the Journal of the National Cancer Institute."

{photo credit}

Potential Postpartum Breast Cancer Therapy (This One Hits Close to Home)

"Nearly 25 percent of all breast cancers among premenopausal women occur within two to five years following a pregnancy. These postpartum tumors are more likely to spread or metastasize to other parts of the body, leading to an increased risk of death.

"Unfortunately, these are young women who have just had children. All breast cancer deaths are tragic but the loss of a young woman who is also a mother is so devastating for families and has a profoundly negative societal impact," said Rebecca Cook, Ph.D., assistant professor of Cancer Biology at Vanderbilt-Ingram Cancer Center, Nashville, Tennessee.

While more research is needed, Cook said the results suggest that using a MerTK inhibitor in conjunction with other therapies could be helpful.

In the meantime, Cook said women who have recently given birth need to be vigilant about breast health."

No Surprise Here: Cancer's Costs Run Deep

"What’s clear is that employment and money concerns haunt many people with all kinds of cancer, nation-wide, during and after treatment. A malignant diagnosis can lead individuals to experience disappointment at work, earn less, retire early and, as a consequence of medical bills, reduce their home and leisure spending."

Predicting When Cancers Will Spread to the Brain

"Up to 30 per cent of breast cancers will eventually spread to the brain, often many years after the first tumour was treated. Tackling secondary brain tumours with radiotherapy and surgery has limited success, with most women surviving just seven months after the brain metastasis has been diagnosed."

Surprise Discovery Makes Way for Possible New Treatment for Breast Cancers

"Researchers at Sydney’s Garvan Institute of Medical Research have found that calcium-binding drugs commonly used to treat people with osteoporosis, or with late-stage cancers that have metastasised, may also benefit patients with tumours outside the skeleton, including in the breast."

Enough Brave to Go Around

I suspect by now you've heard of Brittany Maynard. The 29-year-old newlywed recently made the very public decision to end her life before incurable brain cancer could make that decision for her. If you hadn't followed her story, you can read more about it here.

I've been debating writing about her life, her choice, her death here because I wasn't sure whether I agreed with what she did -- even if I 100% support her RIGHT to choose. After all, who am I to judge? Who are any of us, if we haven't been in the same situation? As my dad liked to tell me when I was young (and very often I had no inkling what on earth he meant): judge not lest ye be judged.

And yet, I couldn't help thinking of all of us who are fighting so hard to stay alive, or participating in clinical trials to further advance research for the next incurable patient who comes along. People lauded Maynard's choice as "brave," which left me wondering what that made the rest of us, those of us who dig our heals in until the bitter, ugly end. Those of us suffering through treatment after treatment in the hopes that one might work. Were we not brave?

Then I realized -- had an epiphany of sorts -- one has absolutely no bearing on the other. 

We can all be brave (or not; a diagnosis of cancer does not automatically turn one into a superhero, and some days, brave has nothing to do with the decision to get up and keep fighting. No--some days, that decision is pure stubbornness, or a deep-rooted responsibility to those who most depend on you to get your ass out of bed, or a little seed of hope that today might be the day they announce a cure). However you look at it, there is enough brave to go around. There is no brave shortage for which we need to conserve.

Putting on our bravest faces

Brittany's bravery was in her voice. Her bravery was in speaking up for the right to choose how you leave this world when you are told you will be checking out very soon. Tick-tock, tick-tock, tick-tock.

I was also diagnosed with incurable cancer, but I have not exhausted my treatment options. I do not have tumors in my brain threatening to take away my ability to make independent decisions. I am not having seizures that leave me unable to express myself. 

I repeat: I am one of the lucky ones. 

***

On Tuesday this week, a dear friend was admitted to hospice care, somewhat unexpectedly, as her cancer has taken a rather rapid turn for the worse. Radiation to treat her inoperable brain tumors (from metastatic breast cancer, not brain cancer) isn't having the desired affect. Someday soon, she will leave her two little girls, aged two and four.  

I cried until I couldn't cry anymore that night, and it had nothing to do with the elections.

This friend of mine told me she's at peace with whatever lies ahead for her. I can't quite wrap my brain around that idea -- of peace in the face of death. For me, it's an idea that no longer fits, like a sweater I accidentally put in the dryer. While I don't understand my friend's acceptance of her fate, I can find a form of bravery there, too. She has come to the end and -- still, she is bravely forging ahead to whatever might be next. My friend is a Christian, and I'm certain she would not choose the path Brittany Maynard did, even if it were an option in Arizona. 

Instead, hospice (from what I understand) provides comfort in the form of spiritual counseling to the extent one needs/requests it, social services for the family being left behind, and palliative care to keep the patient as comfortable as possible for however long it takes. In hospice, treatment for the disease itself is over. This process of dying can take weeks, or it can take days. With Medicare, hospice is available to any patient whose physician certifies that they have six months or less to live.

My friend will spend this time -- however much of it she's got -- with her little ones and her husband standing by. She'll be in and out of consciousness, in and out of pain, in and out of breath, until there is no more and she is just out. 

***

I have a scan on Monday. I expect good results (hope for them with every breath I take if I'm being honest), but I still filled my prescription for Xanax. I'm still jumpy with every weird pain -- the pinching where I probably pulled something under my arm in yoga, the place where my sternum cracks like knuckles when I stretch a certain way, and the headaches that are most certainly from stress and grinding my teeth at night but a little seed in my brain wonders what if anyway.

And all of this has me thinking: I don't know what choice I would make, if my options had run out and my possibilities were between a slow expiration and a quick end to suffering -- mine and my family's.

As my friend Nancy Stordahl wrote this week: "I remember when my mother was extremely ill, lying in a bed at a care facility and unable to do much of anything at all anymore. She was dying from metastatic breast cancer and it was a slow, painful and agonizing experience for her and for my family to witness. I remember there were moments when I wished the end would just come for her because she was suffering so much. I also remember immediately feeling guilty for thinking such things. I bargained with God for more time. I wanted more time; just one more day or one more night. I wanted it both ways."

I am a LONG way from that fork in the road. If and when it gets to that point, though, I really hope nobody will judge me if I move to Oregon, where I could at least get rid of my Xanax prescription.

Around the Web

I had chemo today. A friend I hadn't seen in awhile came to sit with me and catch up. She knows my upcoming scans are on my mind, and asked me if and when I'd opt to quit taking this drug, assuming my scans keep coming back clean.

But here's the deal: I don't know of any other targeted treatments, if cancer were to rear its head again. I keep looking for the research, but it's not there yet. So, even with my (relatively mild) side effects, I will remain on this drug as long as it is working or until something better comes along. A gentle reminder that forgoing treatment altogether is NOT typically recommended for metastatic breast cancer patients, even those of us who are extremely fortunate.

Here is the research I did find on the web in the last week. Have you seen anything you think I should include here? Please send me an email!

The Problem Is, I'm Not Sure This News Is Going to Make Anyone Sleep BETTER.

"According to a new study, cancerous tumors may grow faster at night, during the hours typically taken up by sleep. Their discovery may point the way toward new, circadian-aligned strategies for treating cancer."

Why Has This Not Been Done Before?

"One of the tragic realities of cancer is that the drugs used to treat it are highly toxic and their effectiveness varies unpredictably from patient to patient. However, a new “tumor-in-a-dish” technology is poised to change this reality by rapidly assessing how effective specific anti-cancer cocktails will be on an individual’s cancer before chemotherapy begins.

“This is the first time the 3-D culturing method has been used to predict the effectiveness of different drugs on tumors from individual patients,” said graduate student Alex Walsh, who has played a key role in developing the test."

New Drug Combination May Work as a One-Two Punch On Breast Cancer

"We found if you put the two drugs together, you have much better ability to kill tumors than applying either drug alone," Keri said. "That's the major discovery. Prescribing both is much better than just selecting one or the other."

And Another Promising Treatment Option for Triple-Negative BC Patients

"However, the researchers found that the biggest improvement was in women with advanced TNBC. Overall, this group of women's survival improved by almost 5 months."

Scientists FTW: Getting Lung Cancer Cells to Self-Destruct

[photo credit]

"The discovery, although still in its infancy, could revolutionize the way doctors approach cancer. 'Igniting the fuse that causes lung cancer cells to self-destruct could pave the way to a completely new treatment approach – and leave healthy cells unharmed,' lead researcher, Dr. Henning Walczak, from University College London Cancer Institute, explained in the press release."