Friday, August 28, 2015

The State of My Eyebrows (with Video!)

I never imagined "eyebrows" would be on my birthday list, but there they are, staring me down as sure as age thirty-seven is just around the corner. Nope, I am not complaining. I am happy for every year of it, but it is downright weird to be approaching my late-thirties. I still feel like I should be in law school babysitting for people in their late-thirties in order to have some grocery money.

Yet here I am, thirty-seven on the horizon, and my eyebrow situation has not improved much over the last couple of years. Chris asked me -- over bath time for Quinn, which is when we have time to talk lately -- how much they cost.


"Between $200 and $500, depending on who you go with," I told him.

"I feel like tattoos on your face aren't exactly the time to go with the discount person," he reasoned. "Unless you're Mike Tyson."

True, but even at the costlier, fancier place, the thought of tattoos -- specifically tattoos on my face -- scares me. I'm scared of both the pain and the permanence. I mean, what if I don't like them? What if the artist has a muscle spasm mid-brow? What if I look surprised or angry or any number of emotions expressed by one's eyebrows for the rest of my life?

And then Quinn broke my train of thought and asked why I would need someone to put eyebrows on my face. I could feel the mood shift as Chris waited to see how I would answer.

"Because I had to have some really strong medicine that made all my hair fall out, and all of it grew back except my eyebrows," I explained.

Quinn's eyes grew even more huge as he blinked back shock and processed the idea of something so strong it could make your hair fall out, and I realized he has no recollection of that time in our lives. Most likely because I am light years behind on putting together any kinds of photo albums from his first four years. We don't spend our evenings flipping through and reinforcing memories the way I did with my mom when I was Quinn's age. This is one huge downfall of the digital age, I think, but that's a whole other blog post. 

Have I avoided it because I don't know how to talk to Quinn about cancer? I have a therapy appointment for that exact topic tomorrow. I will let you know how that goes (and whether I have any major breakthroughs because this is still my biggest hurdle, how to explain what I'm living with to my son.)

In any event, here is a little something about my eyebrow process each and every day. In a nutshell, this is why I'm considering tattoos. Have you done them? Considered them? Would you? Let me stop before this gets to Green Eggs and Ham territory. 



Products used in this video and/or products I've found useful:

Makeup Forever's Aquabrow

MAC's brow pencil in Lingering

Anastasia Beverly Hills' Brow Powder Duo

Angled Eyebrow Brush


Tuesday, August 18, 2015

What I Did On My Summer Vacation

Summer's are for leaving Phoenix as much as possible, it's true, but we are outdoing ourselves this year. Quinn is fond of saying we have to leave or we'll burn up (which might not be far off of the truth). One friend on Twitter asked me if I was moving based on this photo I posted about leaving northern California.


No, is the answer. We don't have any plans to move anytime soon. As much as I love northern California, we were there to say farewell to my husband's childhood home, not put down roots (although I have to say those Santa Rosa roots look good on us).


In Santa Rosa, we cried and reminisced and told stories about my mother-in-law's giant heart and proclivity for ice cream and possible hoarder tendencies. We hugged family and old family friends and I tried not to think of how many memorials I've attended in the last several years (too many). We packed up memories and memorabilia stored in a house full of love and a lot of pigs (we could have started a pig museum). We sent a few items with sentimental value home to Phoenix and helped Chris's brother get the house ready to be sold. We said good-bye.

Before Santa Rosa, Quinn and I traveled up to Seattle for some healing time in a place that always soothes my soul, with people who never fail to fill our hearts to overflowing. Chris had a work trip to Mexico so I took the opportunity to leave town as well. We hiked to a waterfall where Q accidentally took a dip in a creek and told me the water was "as cold as that time we went to the snow with Grandma Maryann!" How's that for the opposite of Phoenix?




We rode the ferry up to Vancouver Island, where we built castles out of shells and identified whale bones on the beach and made brownie sundaes with Chris's Aunt Kathie (who always knows how to cheer us up).

Photo taken by Quinn!


We went to the top of the Space Needle, and I fell in love with my home state all over again. I drank a lot of coffee (I've heard it's good for the liver). And we roasted marshmallows to make s'mores and celebrated my best friend Alana's birthday as she and I realized we've been leaning on each other and reading each other's minds for more than two decades now. 




I came home practically begging Chris for a place in Seattle (even despite this article). He said I just need to sell my book. I'm working on that. 


After a blissful week in the northwest and an emotional week in Santa Rosa, we drove south east, my husband tells me, to Sacramento for my college friends' reunion -- which this year included 25 of us, eleven of whom were preschoolers ranging in age from eleven months to five years old. It was blissful in its own way, filled with the giggles and cries and overall adorableness of children who are forging the next generation of friendships amongst my tribe. It's pretty special to see.



I've been absent here because I've been really present among some of my favorite people, something I've learned the importance of over and over again the past four years. There is nothing quite like bookending a memorial service for your mother-in-law with separate visits with your best friends and their children for helping your heart heal.

I am so lucky to have such special people in my life (and fortunate that I've been healthy enough and have the means to travel to see them). I hope I don't take that for granted. I hope you all know how much joy and peace and promise you bring to my life. Thanks a million times over for that.

We got home Sunday night, in time for me to return to reality (and chemo) yesterday. As I put it on one Instagram post, "Home from a beautiful, soul-restoring trip to California that broke our hearts and then mended them in the most beautiful way, surrounded by the love of family and friends who are basically family. We are so blessed."

And today, I got to see Quinn off to his first day of his last year of preschool. Maybe it's the steroids, but I was pretty choked up this morning. I am so grateful to be here, to witness this. Four years ago, when I was diagnosed (cancerversary coming up tomorrow), I didn't quite think it would be possible. I repeat: I am so very lucky.


Friday, July 24, 2015

Why I Won't Be Toasting My Clean Scan This Time Around

I don't even know where to begin, except we have received exceptionally great news this month (my scan was clean, marking twenty months of no evidence of disease), but the occasion was bittersweet, because on July 10th Chris's mom passed away due to complications from advanced Parkinson's Disease. Damn that disease. And this one, too (cancer is not off the hook, no), but mostly that one right now.

Maryann was a beautiful woman, and bitingly funny even toward the end.


The last time I saw her, just before Father's Day, I asked her how she was feeling. She said, "You want the vacation answer or the real one?"

"The real one," I said.

"Like shit," she responded. Those of you who knew her will chuckle a bit at this. She still had so much fight and spunk and spirit, even as her body was failing her. I won't go into details, but the enormity of her spirit was evident in her last few weeks, as she held on for longer than hospice said was possible. In the end, she passed away at home with both her boys and her two favorite nurses there with her.

I loved her deeply, and worried so much about her these last couple of years as her symptoms progressed and her condition seemed to worsen. I tried to cajole her into eating green muffins (made with spinach) along with Quinn, but she couldn't get past the color. Nutrition was easily her least favorite topic as her appetite declined. But she'd smile widely when I would give in and take her to the Dairy Queen drive-thru for "lunch": always a peanut buster parfait. At least there were calories, I reasoned.

I always tried to reassure Maryann (and myself) that the two of us would get through our illnesses together to watch Quinn grow up. "You and me, lady," I used to tell her.

God, how I want to watch Quinn grow up.

***

Quinn told me earlier this week he's going to be an astronaut and fly to the moon, then asked me what I'm going to be when I grow up, when I'm a grandma.

"I don't know. What do you think I should be?" I asked.

"A nurse!" he proclaimed. "To help people."

I just want to be a grandma, but I don't tell him that.

***

Last year, we turned our one-car garage into a mother-in-law suite in the hopes that Maryann would start spending the cooler months here with us (where it is decidedly not cool.) Together with Chris's Aunt Kathie, Maryann and I picked out furniture, decided on bathroom tiles, and went rug shopping together. We bought a painting of a pig to decorate the sitting area.

This week Quinn announced matter-of-factly that Grandma's room is now the "overnight room for when we have other guests."

"I guess you're right, buddy." I tried not to let my voice crack.

It will be awhile before I get around to clearing her toiletries out of the medicine cabinet or taking her robe down from the hook behind the bathroom door.

***

As a family, we are navigating the end-of-life closure, eventually the going-through-and-then-selling the house she'd lived in for 35 years, a memorial service, and down the road, the spreading of her ashes with Chris's dad's (who died of pancreatic cancer six years ago) over the Pacific ocean.

I am trying again to be there for my husband through unthinkable grief. I feel like I have no idea what I'm doing.

***

I am trying to not worry too much when my oncologist tells me: "Your scan was clean, so no cancer, which is great, but..."

... But what?

"Your liver enzymes are a little elevated. We need to take some more blood. Are you on any new medications? Antibiotics?"

No and no.

WTF.

"We had more wine than usual over the weekend?" Chris offers.

"That could be it," my doctor says.


I blush and feel like a kid caught sneaking cookies from the cookie jar because in the last four years, I hardly ever drink more than a glass or two of wine, but last week I drank more than I should have while visiting my brother because I wanted to be normal again. I wanted to forget everything we have going on for a minute. I wanted to enjoy a glorious summer night in the northwest, breathing mountain air and curled up under a blanket while visiting with some of my favorite people and not worry about saying no when my glass got refilled more than once.

My older brother and I celebrating another clean scan in January 2013.

I'm trying not to worry too much. My oncologist doesn't seem concerned and he is one of the most cautious physicians I've ever known.

But when you google "elevated liver enzymes" and one of the first results is "metastatic cancer," it's hard not to freak out. Especially given my history. So now I wait, and will try to quell my nerves with yoga and deep breaths and probably a Xanax at night. The plan is to retest next week and see where things stand.

***

I also have, I think, a tendency to panic when I should be grieving. My brain gets emotionally confused -- or something -- and with Maryann's passing I can't help but feel vulnerable myself. I feel it every time a friend goes into hospice. As another blogger and friend put it, "Every time one of my online friends dies and I'm still here, I go through this combination of guilt that I'm here and fear that I'm next."

Is this an actual documented phenomenon? If anyone with a psych degree can explain my extra worries to me, I will pay you (in wine if you want. It looks like we won't be needing so much of ours).

***

I'll keep you guys posted on my liver enzymes. And if I'm posting a little less here lately, this is why, in a nutshell: we have entirely too much shit going on. Please bear with me for a little bit.

In the meantime, there will definitely not be any champagne toasts to celebrate my clean scan this time around. It looks like a peanut buster parfait is in order instead.

Monday, July 13, 2015

Let's Talk About Sex (After a Cancer Diagnosis)

“If you’ve had chemotherapy, your sexual function has been impacted.” -- Dr. Sage Bolte


Most of us are pretty reluctant to talk about sex and intimacy in the wake of a cancer diagnosis. We think we should be focused on getting rid of cancer, or staying alive, so quality of life issues often take a back seat to the urgency we feel to be well. During active cancer treatments especially, sex is probably the last thing on many of our minds.

But at some point, most of us want to touch and be touched again.

I talked to one friend recently, who was diagnosed with breast cancer when she was twenty-five. She is in remission, but takes ovarian suppression medications as well as an aromatase inhibitor. She isn't even thirty and she's in menopause.

She described it as “life-altering,” to go from being a 25-year old with a healthy sex drive to basically not thinking about it for long stretches of time, and then only because she would start to feel twinges of guilt for physically ignoring her live-in boyfriend (whom she describes as a saint).

"It's never addressed," she said. "Oncologists don’t typically bring it up, unless you have the courage to talk about it first, and it’s hardly a comfortable topic. It’s mind-boggling."


Dr. Bolte, who spoke at the conference I attended at AstraZeneca about intimacy issues and about depression and anxiety after cancer, says this hesitance to discuss our sexual selves with our care team is unfortunate, because there are solutions.

One of the primary reasons patients give for not bringing up intimacy with their doctors is they fear there's no way around the loss of it during (and even after) cancer treatments. But sexual dysfunction is one of the top quality of life issues concerning cancer patients. And according to Dr. Bolte, the incidence of altered sexuality can persist for years.

Obviously, my experience is with breast cancer, treatments for which can cause a litany of side effects, including:
  • mouth sores
  • fatigue
  • dry, cracked skin and mucous membranes
  • often, loss of or damage to a major sexual organ (breasts) due to surgeries and radiation
  • vaginal stenosis (narrowing) due to chemically-induced menopause
  • hair loss
  • weight gain (or loss)
Other cancers can lead to similar side effects, and my guess is that no one who's been through cancer treatments has been left unscathed.

In addition to debilitating physical effects are the pschyo-social and emotional ones. Partners often take on the role of caregivers, and it can be tough to transition between the caregiver/patient and lover relationships. It can also be tough to maintain a sense of peace about your body when you might feel it betrayed you by "letting" cancer happen. Or you might be self-conscious about a new appearance.

After active treatment ends, for those of us who are lucky enough to be able to move on to targeted therapies, sexual function may lag behind. According to Dr. Bolte, most of us want healthy, active sexual relationships, but many are reluctant to bring up the topic with our healthcare providers. Not helping is that most oncologists are just as reluctant to bring it up with us, their patients. 

So what can you do? What are the solutions?

  • Discuss your concerns with your doctor. If not your oncologist, then maybe your gynecologist who may be able to recommend strengthening exercises or non-hormonal lubricants that can help. There is also this, which "can be done in lunchtime." How's that for innuendo?
  • Talk to your partner about expectations. Sex during chemo is probably not a priority, but maintaining intimacy should be. Hold hands or cuddle during marathon episodes of Orange is the New Black. Make time for date nights (or afternoons, since us cancer patients are often exhausted by the end of the day.) Dr. Bolte said one couple she knows of started reading erotica to each other and arrived at their next therapy appointment with shit-eating grins on their faces.
  • Communicate about desires and needs. This seems so straightforward, but things change so much after a cancer diagnosis. I'm noting it again because it is so true for me: we are often exhausted at the end of the day. Rethink when you might be more willing to connect. And certain areas might be too sensitive or painful to touch. Share these things with your partner before you're fooling around so that feelings don't get hurt if you recoil when your scar tissue accidentally gets grazed. 
  • Go back to some of the basics. Make out like you're in your parents' basement in high school. Wear pretty lingerie if that's your thing. Write each other love notes. Take a bath together. The goal doesn't need to be sex as you once knew it. 
For additional resources, Dr. Bolte recommends the following books: Men Cancer Sex, Women Cancer Sex, and Sex Matters for Women: A Complete Guide to Taking Care of Your Sexual Self.

Saturday, July 11, 2015

Around the Web: Sore & Bruised Edition

I'm pretty sure I gave myself whiplash last weekend when I tripped on the laces of my sandals during an aggressive game of duck-duck-goose. One minute I was the "goose" chasing Quinn, the next I was smacking the cement with such force and velocity that my sunglasses went flying, I scraped most the skin off my right elbow, and all of my pride went floating away like a lost balloon.


Remember? I told you I'm a bit of a klutz.

I woke up on Monday with a headache and a sore neck, both of which have gotten better as the week goes on. My elbow too. That hasn't stopped me from wondering if I have brain mets due to the headaches or bone mets due to how sore my elbow is. 

Hey, I never said cancer made me more rational. 

Speaking of sore, I've started a new exercise routine, although calling it a routine is a bit of a stretch since I've only gone four times in two weeks. I'm started doing Pilates with a couple of girlfriends after one of them roped the other two of us in like cattle about to be slaughtered.

My texts with my other new-to-Pilates friend have gone a bit like this over the last 24 hours: 

Me: My calves are burning!!!!

My friend: I mean, my calves hurt so bad that if I stay stagnant for too long, the second I get up, I almost crumble.

Me: Every time I go to stand up, my legs seize up. I might sleep on the couch just so I don’t have to move again.

My friend: OMG...I know. I just walked from the couch to the desk (and you know how short of a distance that is) and about fell over.

Here's the deal, though. I figure if I exercise enough that I'm always sore somewhere, it somehow makes the pain less likely to be from cancer. Or takes my mind off of cancer (a little, anyway).

And speaking of cancer, here's why you're here, the things I saw in the world of research around the web this week.

***

Do Patient Navigators Actually Help?

What do you think? Have you used services like this? Would you? I haven't, but then I kind of have because I have my husband Chris, who is basically my extra set of eyes and ears and most definitely my extra memory. 

Also, this: 

"In the end, many say, debating patient navigation may be asking the wrong question. Why not, they wonder, spend the money and energy needed to overhaul the entire cancer-treatment system?

“One question worth asking is why do [patient navigators] exist,” Ramsey said. “And the reason is the cancer community has done a very poor job of helping patients through the system. The fact that navigation exists is kind of an indictment of the cancer-care system.”'

Why BRCA Genes Eventually Resist Cancer Treatment

"Now, scientists at Yale School of Medicine in New Haven, CT, have pinpointed a key molecule called co-factor DSS1 that helps the BRCA2 gene to repair DNA.

They note how "DSS1 acts as a DNA mimic," and without it, BRCA2 mutations cannot do their job of repairing DNA - which is key to the survival of cancer cells.

The team says the findings point to a possible way to decrease drug resistance in cancers involving BRCA genes.

Senior author Patrick Sung, a professor of molecular biophysics and biochemistry, suggests drugs that interfere with DSS1 function could be developed and used with existing drugs to overcome this resistance."

A Clue About Why Brain Metastases Occur, And One Possibility for Stopping Them

This is at a way early stage (mouse models), but looks promising. 

"Removing a single protein from the blood could stop breast cancer spreading to other part of the body, scientists have discovered.

They identified a key molecule, which triggers the growth of blood vessels in tumours that have spread to the brain - a common secondary site for breast cancer to spread.

By withholding the protein, called DOCK4, a particular part of the blood vessel did not form as quickly, meaning tumours grew at a slower rate, scientists found.

Dr Georgia Mavria, from the University of Leeds, said the discovery could help develop new drugs and identify people at risk of their breast cancer spreading."

How Many Studies Like This Do We Need?

"The increased use of mammograms to screen for breast cancer has subjected more women to invasive medical treatments but has not saved lives, a new study says.

After reviewing cancer registry records from 547 counties across the United States, researchers concluded that the screening tests aren’t working as hoped. Instead of preventing deaths by uncovering breast tumors at an early, more curable stage, screening mammograms have mainly found small tumors that would have been harmless if left alone."

It's also very much worth reading this piece by the always-insightful Elaine Schattner, who writes, in part: 

"But mainly I’m concerned about the author’s definition of overdiagnosis, and their conclusion. In the paper’s second paragraph they write: “However, there are increasing concerns that screening unintentionally leads to overdiagnosis by identifying small, indolent, or regressive breast tumors that would not otherwise become clinically apparent.”


Yes, there are fast and slow breast tumors; pathology varies. As I will discuss in a post forthcoming, knowing the details of breast cancer should enable women and their doctors to avoid overtreatment, which is a real phenomenon and can be separated from overdiagnosis.

But regressive breast cancers?"

Exactly.

Adding Progesterone to "Double Positive" Patients' Protocols Could Increase Survival

"It turns out that when progesterone sticks to the progesterone receptor in cancer cells, it alters how the oestrogen receptor works, and effectively puts a second brake on tumour growth. Tests showed that mice given progesterone and tamoxifen had breast tumours only half the size of those given the drug on its own.

“Crucially, it provides a strong case for a clinical trial to investigate the potential benefit of adding progesterone to drugs that target the oestrogen receptor, which could improve treatment for the majority of hormone-driven breast cancers,” Carroll added. Details of the study are reported in Nature."