Coincidences And The Ugly Side Of Intuition

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This summer I went through this phase of researching long-term disability insurance options, rewriting our wills and reviewing life insurance policies. We also got a new dog, not only because we missed our old dog, but because I didn’t want to regret getting another dog for the kids in case something happened to me. I also started studying constellations – my youngest son had “studying stars” as part of a summer project, and I just kept going. So each night while walking Joe I’d look up, see how many more constellations I could identify, and try to think beyond my small little world. You see where I am going with this.

When I was first diagnosed with breast cancer in November 2015, I was indeed upset, but I wasn’t concerned with the prognosis. It was when I was restaged after surgery that I went downhill. In light of all of these preparations I took on this summer, I was absolutely convinced I was dying. Intellectually, of course, I knew this was not true; I still have so much treatment ahead of me, one drug that is new, the other changing the HER2+ diagnosis from one that was extremely poor before 1998 to one that is very treatable.  But every day in the pit of my stomach, I thought it had to be more than just a coincidence that I would start prepping in the case of my death and wondering more about the notion of heaven only a few months prior to my diagnosis. I was convinced my actions were signs of things to come, and I became more frustrated than ever that I logically could not get passed it. This despair and obsession lasted for weeks. Then, this week a social worker called from Dana-Farber. I told her this story.

“That’s called intuition,” she said. “I hear stories like that all the time.” No kidding. And then I remembered the last time I took a Myers-Briggs test, I came up as INFJ. Of course I was freaking out. But it was completely normal. There was comfort in that, and in the past few days, I haven’t really thought about it.

***

I decided the first week of January to be treated in Boston at the Dana-Farber Cancer Institute. It’s a bit far from where we live, but nothing unmanageable. And Boston is my hometown. It would be a disservice to me and my family if I didn’t go to one of the best cancer clinics and research facilities in the world that happens to be two hours away. So as of 1/7/16, I have been (and will be) in Boston every week for twelve Taxol infusions, receiving Herceptin and Perjeta every third week. Once that’s completed, I’ll receive four rounds of the Adriamycin / Cytoxan cocktail (also affectionately known as “the red devil“) over another twelve weeks. Then I’ll receive more surgery, then radiation, and more Herceptin every three weeks. 2016 will certainly be a long year, but we’ll definitely make the most of it.

Getting Chemo At Dana Farber

The crazy part, so far, I feel fine. I get tired a few days after treatment days, but nothing absolutely unusual, and I love going to Dana-Farber. Tomorrow is my fourth round of Taxol, and just yesterday my hair started to fall out – not in big chunks, but lots of noticeable strands everywhere. Just as well, really, it was going to happen eventually.

I’ve thought pretty hard about sharing ongoing details. Things on the internet live forever. And of course I realize what will come up in search results under my name (beyond the other Monica Wright, of course.) It’s hard to be public about something so personally frightening, while maintaining strength and composure. But last week while looking at the Dana-Farber site I came across Tara Shuman’s blog, she articulated so many things I was feeling, there were too many similarities to our stories. I asked her about her book and read the entire thing in one day. I wasn’t alone. I realized that there are thousands of us at any given time, and when I can give back (not IF, but WHEN), I hope somehow I’ll be able to guide others through this journey, too.

A Thought About Christmas Miracles…

Two days ago my friend Purna messaged me, “The Hindu gods are several.”

I am Catholic, but that doesn’t matter. My friends of all faiths have been praying, lighting candles, putting my name on temple rolls, sending reassuring words of encouragement for weeks.

After my surgery on Dec. 11, I learned that the cancer was indeed in the lymph nodes – in fact in all four of the lymph nodes biopsied. Despite two mammograms, three ultrasounds and an MRI, the tumor was three times larger than projected. The pre-cancerous area was twice as large as projected. When I was first diagnosed I was afraid of pain, treatments and the long road to recovery. Then in an instant I became afraid for my life. It’s now Stage III, not Stage I. It’s now Grade 3, not Grade 2. I have some very naughty cells trying to take over. So naughty that the surgeon couldn’t get clean margins after surgery. What if it has spread to the rest of my body? And what if they come back, two, five, ten years from now?  The risk has felt very real – a wonderful woman whose son plays in the same football league as my son just passed away this fall after a recurrence. I was in despair.

My family and friends knew this, and the good vibes continued to come. The calls, the stories about long lives, the food, the surprise gifts, and the jokes all still came. My aunt and one of my oldest friends both joined Facebook – after years and years of protest – only to check in on me. I had friends ready to hop on planes. I even received cards and letters from friends of friends – people I have never even met – offering words of hope, to remind me to fight, that the not knowing is the darkest place. And what also came were the flood of prayers.

Driftwood Christmas Tree

It was barely ten minutes after Purna shared her sentiments about the Hindu gods that I got the call from the hospital. “I have good news!” the nurse shared. “The bone scans and CT scans are clean!”

Now I have many friends who are atheists who I know will claim this is all science. Yes it is indeed science, I will never contest that. And maybe it was just a coincidence that I got that call at that time. But the physical and emotional relief I felt at that one moment, and the outpouring of the human spirit and love (and faith) I have received over these last few weeks, have been nothing short of miraculous. Thank you, everyone – to humans, to gods, to Jesus and spirits everywhere. Thank you.

Merry Christmas from me, my family, and Little Joe. IMG_7591

P.S.: While looking at my bone scan during my follow-up appointment the surgeon asked if I ever broke my ribs. I have no recollection of ever breaking my ribs, I’ve been injured a few times, but nothing broken, from what I can recall. She said, “Mmm, yeah, you’ve broken your ribs.” Now I don’t know which sparring partner over the past nine years I need to thank for that, but if anything it made me feel a lot stronger about the year to come.

I Have Breast Cancer

When you visit the doctor’s office for the first time officially diagnosed with breast cancer, they give you a handbook. It has tulips on the cover, filled with diagrams, charts and illustrations in different shades of pink, all while using a scripty, flourishy font usually reserved for sympathy cards or feminine hygiene products. Topics include “How To Wear A Seatbelt After Your Mastectomy” and “Exercising Your Surgical Arm.”

I told my friend Amy that the book remind me of the workbooks we used to get in CCD class with worksheets asking those thought-provoking questions at the end of each chapter to see if we understood the material, if we were indeed ready and worthy to receive the Holy Spirit.

I’m not ready. So it sits on my desk, with a blue folder on stacked on top of it.

FullSizeRender

***

The doctor called with biopsy results late on a Monday night. Our beagle Little Joe was bitten by another dog earlier that day, we had spent the evening at the emergency vet clinic to get his ear stitched up. There were dishes in the sink, homework papers everywhere, dog blood still spattered on the wall between the kitchen and the front door from when Joe shook his head. It was about 9:30 pm and I just came in from attempting to walk Joe with the Cone of Shame, which many dog owners can relate that it’s nearly impossible. I came in to kids arguing, I yelled again about brushing teeth as I cleaned the wall. My oldest son said the doctor called, but he didn’t take a message because he’s calling back. I started to fume about not taking messages.

Up until I spoke to the doctor that night I really wasn’t that concerned. I have regular mammograms, this year it was the same routine. I was just called back. And then called back again. And called again for an ultrasound. And called again for a biopsy. But the internet (I have more to say about the internet in a moment) states about 4 out of 5 biopsies are negative. I have no family history. Odds were in my favor. And plus, if it is positive, I know enough people that had a lumpectomy, maybe some radiation, and then they were good as new. Nothing I can’t handle.

I managed to write four words during that 20-minute call, of which I can’t remember a thing. Two of the words are obvious, as if my hand was just writing what he was saying without any understanding. I did manage to write “mucinous” and “easy-to-treat.” But this isn’t entirely true – “easy-to-treat” and “treatable” are two different things. What I was told wasn’t the full diagnosis, I didn’t get the complete pathology report until the next day.

Mucinous carcinmoa notes

I needed to sleep, I was supposed to be on a flight that next day to Las Vegas. I was supposed to speak on a panel that Thursday, and I still needed to pack. I decided to go to bed, and shockingly fell asleep for about two hours. At 1:00 am I sat at my desk and started searching. At 5:00 am I called my mother. She began to wail.

***

The statistics show that only 1-5% of breast cancers are mucinous in nature, more prevalent in older women who are post menopausal. I’m still young, no signs of menopause.

My tumor is also triple positive for estrogen, progesterone and HER2 receptors. Mucinous carcinoma is rarely positive for HER2. (An aside, triple-positive is a better diagnosis, treatable with hormone therapy in addition to other treatments.)

This type also generally doesn’t spread to lymph nodes. Next Friday I’ll have surgery to learn how invasive it has been to my body. Fingers crossed that in this last case, the odds will finally be in my favor.

***

I didn’t go to Vegas. But over the course of that week I spent sleepless nights going down rabbit holes of treatment options, alternative medicines, recurrence rates and mortality rates. Luckily, the people I have told kept me in check.

Mortality Calculator Message

It was recommended that I don’t share this diagnosis socially right away; it’s too risky with all of the opinions, all of the stories of people who know people who went on strict diets or had special enemas or had their fillings removed and their cancer miraculously went away. I’m already on information overload. But I’m social in nature and a big part of my community is online, so eventually I was going to talk about it, the support is needed and welcome. But this is where I stand firm – I’m a fan of modern medicine and that’s not going to change. And I’m likely going to need a lot of it, including surgery, radiation, chemotherapy and hormone therapy. I’ve already gone through genetic counseling which will help inform the course of treatment over the next year. It’s going to be a long road. And my family needs support too, which is why I’m sharing the diagnosis here today. That’s where you’ll come in.

We need the humor, the ba(l)d jokes, the everyday interactions that we’ve always had. There will be days when we worry, but so far, the prognosis is very good. I’m not dying (despite what the mortality calculators say)  – but there has been mourning. My body let me down. And once treatments start I’ll likely feel like crap. I might lose my hair. There will be – and has been – sadness. And deep down I’m torn because I don’t want to be treated differently professionally, or be “that kid’s mother with cancer.”

But I have to accept that this journey will be part of me. I just can’t let it define me.

Growth Hacker? Or Growth Marketer?

I don’t like the way the word “hack” is being thrown around willy-nilly, especially in regards to marketing. And according to some definitions, I’m actually a growth hacker. I don’t like it.

Last week my colleague (read: boss) Danny Sullivan tweeted:

Good question.

I participated in a tweetchat a few weeks ago about #growthhacking and that same question came up numerous times – how is growth hacking different than marketing? And, how is hacking necessarily a good connotation when it comes to marketing? That short conversation didn’t seem to get very far, but I still felt like I was missing some secret marketing approach that was going to save me oodles of time and headaches. Isn’t that what hacking means these days? Over the past few months I have been visiting the GrowthHackers forum periodically, checking out videos on GrowthHacker.tv. There are some great ideas, and some excellent resources. But I couldn’t seem to definite it differently from smart marketing. So I looked it up.

What is Growth Hacking?

I first came across growth hacking via Mattan Griffel, partner at GrowHack, who defined growth hacking as “a set of tactics and best practices for dealing with the problem of user growth.” You can check out his primer on Slideshare (you can skip to slide 43, and if you’re short for time go straight to slide 102 through 137) but it all looks so, so familiar, including A/B testing, email marketing, and segmenting your audiences.

I dug a little deeper, and discovered Sean Ellis first described a growth hacker in 2010 as someone in charge of scalable growth, primarily for start-ups, without the inflated credentials of a traditional marketer.

I found more satisfying definitions and opinions of what growth hacking means over at Quora, and liked this definition of growth hacker from Aaron Ginn:

growth hacker (noun) – one who’s passion and focus is pushing a metric through use of a testable and scalable methodology.

In this case, a growth hacker is someone who is more concerned with achieving the growth metric rather than getting bogged down by a defined process.

I really like Aaron Beashel’s process in 4 Stages of Growth Hacking, but to me, this is far from a hack, it is a legitimate painstaking process to build customers. It’s work, there are no shortcuts, so why is it hacking?

Nick Usbourne, a self-proclaimed “growth hacker since 1979” (back then we called it “direct marketing”) reviewed Growth Hacker Marketing: A Primer on the Future of PR, Marketing, and Advertising, and concluded that much of growth hacking is marketing.

Patrick DiChiro took another approach last year, distinguishing the differences between growth hackers and brand marketers, concluding that in order to be successful, the two roles will ultimately collaborate together.

And recently TechCrunch article depicts how growth hacking can go “bad” to spammy digital marketing shortcuts, especially to meet investor expectations.

It seems like what once had been defined as a creative, start-up marketing role in 2010 has evolved into as using aggressive tactics that just annoy and infuriate users.

So Do We Have To Use The Word “Hack” When Talking About Marketing?

Personally I still define the word “hack” as unauthorized entry into a system, or cobbling code together as means to get to a desired outcome. The phrase “hack job” implies you have no idea what you are doing. And, in case you were wondering, the word “hack” originates from the word hackney, which can mean, “To cause to become banal and trite through overuse.” My friend Kristy Bolsinger shared this ridiculous article where two of the “it” jobs to watch for startups have “hacker” in the title. Yet all these definitions and descriptions about growth hacking sounds a lot like what I do. Maybe I’m old fashioned and tired of buzzwords, but I would rather explain exactly what my role is in a company and talk about growth and engagement. Because all I can think of is hacking and wheezing. So let’s just stop already.

Dear LinkedIn, Please Fix Your Stuff

Last week I read that Chris Brogan closed his LinkedIn account because it was no longer working for him. Not just “not working” in that it doesn’t drive business or suit his needs, it actually wasn’t working.

I like LinkedIn, I really do. I like that you can export contacts and in fact reinstate your account if you do decide to cancel it (which in itself is a lesson to those who think that their data is solely theirs.) I like how you can keep tabs with colleagues, and it provides an easier entry point to connect online with people you don’t know as well. I like how users exchange ideas, how business use it to recruit, network and share ideas. I like it how it can drive traffic to sites. Lots of advantages.

But it is broken. Chris mentioned his frustrations. Here are mine:

1) At one point the LinkedIn Share button on searchengineland.com had been hacked. Luckily this was resolved, but it’s unsettling that something like this could happen. SEL attracts significant traffic, and it impacted overall user experience that’s expected ON THE SITE – not on the social platform.

2) On the Search Engine Land and Marketing Land Groups, the Manager’s Choice options are both broken. The Search Engine Land group button has been broken for 10 months, and the Marketing Land group button is now broken. We submitted previous help requests for this as well, without a clear answer besides it’s a “known bug.” The news we have had posted in Manager’s Choice is extremely outdated and it gives the impression that we are not actively managing the site. My own profile is associated with the last post we made to Manager’s Choice – having an outdated post also makes me look bad. Did I mention it has been broken for ten months?

3) The newest issue was the email notifications generated when the moderators comment on a discussion, or approve a discussion in our groups. When we commented on a discussion, there is a check box that offers email updates of that discussion. Although the check box is marked, we did not receive updates. This has been fixed as well, but without follow up. I had to do the work and keep checking and testing.

I mentioned that it is getting increasingly difficult to get a clear answer of when these issues will be resolved. I begged at times, and contacted whomever would listen. Unfortunately these problems seem to compound as the group gets larger, just when we need to manage the groups more frequently. I wish these tools were more reliable.