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.

So this happened (extra blood work) because even though my CT was clear, my liver enzymes are mysteriously elevated. Dammit. #scantreatrepeat #stage4needsmore

A photo posted by Jen Campisano (@jencampisano) on Jul 22, 2015 at 4:33pm PDT

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.

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.

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."

Officially Unemployed...And That's Okay

I knew it was coming, but it was still a blow to my ego to get the notice from my (former) employer in the mail. As of last month, NYSE Governance Services could no longer hold my compliance counsel position, since I've been out on long-term disability for two years now.

My resumé is officially blank. This is probably the end of my career as a lawyer.

I knew I probably couldn't go back. Almost one-third of the time I don't have enough energy to leave the couch. I have entire conversations with Chris and I cannot recall one iota, not one smidge, of the words we exchanged. The only reason I got 5,216 steps logged yesterday is because I'd forget why I entered a room, and end up making something like thirty-five trips back-and-forth across our house in an effort to find something that was in my car parked in the garage all along.

I'd have no business being a lawyer right now. Not a good one, anyway. 

I used to write white papers on how the Citizens United decision might affect a corporation's political donation plan, or help executives determine whether they were effectively training their employees on ethics and compliance issues. (You can wake up and stop drooling on your desk, now.)

Most of the time, my brain does not function on that level any more.  I am out of practice, and it's okay.

It is okay.

It took me awhile to admit that I am finally okay with this new reality, this not having a career that I worked really, really hard to achieve. That I'm okay being a full-time mom and full-time patient and part-time advocate. (I'd be okay without the patient part, honestly.)

It is finally getting easier not to compare myself to my friends whose careers are gaining steam (because that's what typically happens in your mid-30s). I have brilliant, hardworking, ambitious friends in my close circle who're vice presidents of major companies, engineers, surgeons at some of the country's best hospitals, nurses who help bring babies into the world, scientists who help patients get access to medicines they can't afford, professors, and -- yes, stay-at-home-moms who've left their careers as lawyers, too.

I can be proud of them and admire them without thinking less of myself, and more importantly -- finally -- without feeling sorry for myself about one more thing cancer took from me. This is my life, and it is more than okay.

(Don't get me wrong, I still have moments when I feel emotional about the lack of accomplishments I make on a day-to-day basis, like the fact that there are laundry piles everywhere, or piles of old magazines I mean to sort through, or piles of disability paperwork that needs to be filed... Basically, my piles sometimes make me cry.

I am working on some overdue spring cleaning, metaphorically and realistically.)

***

When Quinn asked me the other day why he had to go to school, I hesitated. I wasn't sure what to say.   On average, he goes to school about three days a week. His preschool is community-oriented and play-based, so it's basically days spent painting and making play-dough and reading and building cities out of blocks. Most of the parents know each other, and many of us spend time together outside of school.

So I said, "Sometimes, it's so I can go to the doctor. Sometimes, I get some work done." I didn't tell him that sometimes I lie on the couch and surf the internet for cancer cures for a couple of hours at a time. "But if you don't want to go as much," I continued, "you don't have to yet. I'd love to spend more time with you."

And he responded, "No, I want to go. I want to be with my friends." And then my heart shattered, but also swelled a bit, because my little guy is growing up and his friends are important to him, too.

Plus, I love it that he loves school as much as I did when I was a kid.

Around the Web: AstraZeneca Edition

Nope, this post is not sponsored. But I did spend last week (well, two days of it) at a conference for oncology bloggers at MedImmune, the global biologics research and development arm of AstraZeneca Pharmaceuticals. It seems more and more companies in the healthcare space are taking note of how patients communicate with each other and realizing it might be useful for them to join the conversation.

Deep in thought about oncology topics

"The role of the patient has evolved over time and today patients are more involved than ever in their healthcare and look to one another online for support, advice and a sense of community. AstraZeneca strives to engage with patients to ensure the latest information and support resources are available, and help determine where unmet needs remain."

You can read more about the AZ summit here.

I flew out to Baltimore for less than 30 hours on the ground, a whirlwind of sessions and lab tours and conversations with women I'd only previously known online, one of whom (CJ) cofounded METAvivor and has now been NED for six years. Talk about inspiration.

Here are a few of us touring the lab and looking "distractingly sexy," if I do say so myself.

Touring the Phase I Oncology Lab at MedImmune

Speaking of sexy --  how was that for a transition? -- I'm working on a separate post about one of the summit's sessions. It was led by Dr. Sage Bolte and focused on intimacy after a cancer diagnosis, which is not a typo.

But we still have a lot going on here as a family and I'm in a chemo fog this week, so please be patient with me. In the meantime, here's what I've seen around the web since I last posted this series. One of these days, I'll try to be regular about it!

Even More Reason to Cut Back on Stress After a Cancer Diagnosis

"Recently, researchers have discovered that the hormone progesterone, an ingredient in contraceptives and menopausal hormone replacement therapies, might stimulate the growth of breast cancer cells that are resistant to anti-estrogen therapy and chemotherapy. Now, new research published June 22nd in the journal Oncogene, a Nature publication, shows that additional hormones, including stress hormones that are frequently used to treat the side effects of common chemotherapy, could make these effective cancer drugs fail sooner in some women with breast cancer. But there may be ways to counteract the effect."

Promising Results in the Paloma-III Trial for Ibrance/Letrozol

(Which, if you'll remember, was fast-tracked for FDA approval pre-trial results back in February.)

Liquid Biopsies Are All the Rage, But Are They Helping Patients Yet?

"So far, most insurers, including Medicare, don’t pay for these kinds of tests. They don’t think it’s their role to underwrite what looks like a research experiment. Health insurer Anthem labels the tests “investigational and not medically necessary.” Cigna calls them “unproven.”

Eventually, the most important use of liquid biopsies should be to catch signs of cancer early, before symptoms arise—when a surgeon can cure it by cutting it out (see “Spotting Cancer in a Vial of Blood”). Such screening could profoundly reshape cancer medicine.

For now, though, they are being used as “theragnostics”—that is, tests that guide decisions about treatment."

THIS is Why We Walked and Lobbied All Over Capitol Hill

"Cyrus Ghajar, Ph.D., a metastatic breast cancer researcher at Fred Hutchinson Cancer Research Center, has received a $4.1 million Department of Defense Breast Cancer Research Program (BCRP) “Era of Hope” Scholar Award.

The Department of Defense’s BCRP is the second biggest funder of breast cancer research in the U.S. Its Era of Hope award encourages high-impact, collaborative research, particularly among innovative young researchers."

Huge Implications for the Future of Treating Genetic Cancers

“In 10, 15 years, our relationship with genetic disease will be very different from today,” says Jacob Corn, managing director of the Innovative Genomics Initiative—a joint effort of UC Berkeley and the University of California, San Francisco—which is collaborating with drug maker AstraZeneca on using Crispr-Cas9 to gain a better understanding of diseases. “It will be, ‘Oh, my child was born with sickle cell. We’re just going to change that.’ ”

Why Nearly EVERYONE is Excited about Immunotherapy

"10 years to cancer cures 'actually plausible,' Fred Hutch president says. . ."

“And I’ve never seen anything like this in my life,” Gilliland continued. “You give this cell-based therapy that was developed by [Drs.] Stan Riddell and Phil Greenberg at the Hutch, and these tumors just melt away. People go into continuous, complete remission. You don’t need to keep giving the drug, you give it once. One infusion — that’s it.”

The potential for extending this powerful approach into other types of cancer, especially solid tumors, has created a sense of urgency among researchers at Fred Hutch and elsewhere."

An Illustration of How Immunotherapy Works