so i have cancer...

1)  fuck cancer.   2)  yes, i have cancer.  It’s breast cancer.   3)  There’s just no way to really preface it and get someone ready to read, much less receive, that news.  4) I’ve had over 120 conversations with people in person, over the phone and sometimes through voicemail-tag & texts or email, back & forth.  I’ve even performed and spoken about this publicly, but this feels hard -> writing it out for the “public” that includes friends and colleagues and community whom I’d love to have told this to directly or through a direct friend communication.  Please accept my understanding that this can be jarring and feel (c)rude, even.  5)  I don’t know how to say all of this except in short bits.  6)  Here’s a version of what I’ve found myself telling folks at the beginning of all of those conversations...what I would say to you if we saw each other in person today:

So, I’m going to be all good in the long run and I just want you to hear this from me - one month ago on June 20th, I was diagnosed with Invasive Ductal Carcinoma, a form of breast cancer.  I am now with a great team at City of Hope under Dr. Kruper, who is their Chief of Breast Surgery Service.  It looks like we caught it fairly early - Stage II.  We’re lined up for an MRI and ultrasounds and genetics testing over the next few weeks and I should know a lot more with my follow up on August 9 as to additional information on tumor (initial pathology shows 2.1 cm for size of tumor) and the area of DCIS, which will both affect what kind of surgery I have.  Then, we’ll have to wait a little longer for the results from Genetics to get more info as it relates to the medical path overall.  For now, please just send out your love and beautiful, strong energy for me!

In the meantime, next principal steps for me include:  

1) setting up this here blog with the help of the uber wonderful Lauren Moon (who generously offered to work with me once a week through this journey).  This way you can check in with it on your own for updates + HELP ME from repeating the same news again and again and again ->  ***SIGN UP BELOW to follow this blog*** <-  (I'll try to post a couple times a month/will try to share it on FB)

--and--  2) having LOTS of TIME to:  HANG OUT;  relax;  learn new recipes;  exercise and increase my strength to ready my body for what’s to come;  keep up with writing and show projects as usual (Yay, WLP!  Yay, PULLproject!);  karaoke like nuts & dance at Obon as much as possible;  maintain most gigs in the shorter and longer terms (mid-term will depend on medical/treatment schedule);  cut out most daytime meetings and call in versus drive in when necessary;  do community organizing stuff from home+phone;  be with people and HAVE FUN.

I’ve been writing a ton during the day and waking up in the middle of the night to write, too.  The latter is pretty usual and I do need to work on insomnia issues.  But the former is pretty wonderful, as I’ve trimmed the fat to preclude me from bending my life around running from event to meeting to thing to thing to thing.  Mostly, though, and the greatest change, clearly, has been the gift of shifting time to be with PEOPLE.  I got enough work and art in my life...but when’s the last time I hosted a barbeque in my backyard with friends?  When’s the last time I made plans with my brothers, my nephews, my cousins?  (forthcoming blog entry on Community-Self Care & Guilt…)

--“How did you know?”--

I get asked this a lot.  I got a routine mammogram (hadn’t had one in two years since my first one at age 40); this showed dense breast tissue (which is common as we age) and led to an ultrasound on my left breast; the ultrasound showed calcification and that led to a needle biopsy, which then reported the cancer in the pathology report.  It might be important to note that I had been meaning to get another mammogram, but kept putting it off, even after losing my Auntie last year (she had non-Hodgkins Lymphoma and previously had breast cancer).  PLEASE don't wait -> If you're 40, start getting an annual mammogram and get it done every year - you can request this if you have cancer that runs in your family.  If you have breast cancer in your family and are under the age of 45, you are eligible for gene testing.  If you've got an early 40-something friend, sister, auntie, cousin, consider using this opportunity to just say & ask -> "Hey, i read this thing and it made me you get a routine mammogram?"  

--Do You Know Someone You Can Connect Me To?--

My pathology report from the needle biopsy says: “Invasive Ductal Carcinoma with extensive DCIS.”  My breast cancer is a common form with “good markers” - Estrogen and Progesterone Positive / ER/PR+ and not HER2.  This is “good” in that there are anti-hormone pills and known treatment considerations to help me in the long run.  If you have close people who have or have had this same diagnosis, I’d be interested in speaking with them - especially if they were pre-menopausal and around 42 years old, like me.  And, especially, if they hadn’t yet had a kid...and were still thinking of the possibilities around having a child, either with their eggs+carrier or with their own body [[[ 1) were they also ER/PR+?  2) Did they decide to not take the anti-hormone pill - were they able to?]]] - well...that's a whole piece in itself...i’ll return in a future post to process that one!

--Difficulty in Talking About Difficult Things--

In just the past 32 days of conversations, I have learned SO MUCH about communication.  I’m so utterly grateful at all the reaching out and follow up and huge shows of support that step up to my door.  And I’ve learned a great deal on communicating over and through difficult, life-pausing/challenging/check-in reflections that something like cancer can bring to the forefront.  My next post will be all about this - The Difficult Things, from the things I’ve said to myself to the conversations with my partner, family and friends.  In the meantime, here are my general rules as it relates to how you can support me through our communications (with cancer and in life):

  • Speak freely -> when we see each other, it’s okay to tell me you heard from someone that I have cancer, or you read this, and then share with me what you’re thinking.  It’s okay to tell me that you’re freaked out;  that you don’t want me to lose my badass hair;  that you have great news (of course I want to hear it!);  that you have tough news (of course I want to hear it);  that you want to be on this journey with me;  that you don’t have any clue on what to say.
  • Stray away from assumptions -> even if you have someone in your life who went through breast cancer, there are so many different factors - everything from Rate of Recurrence to genes to age to psychological & emotional factors related to age and insurance hell and whether we have children, don’t yet have children, etc. etc. etc. (ya know what I mean?!)  And, it’s important not to assume in either/any direction in terms of how I’m dealing with this or wanting to deal with this (plus, it’s not a static situation).  It’s always better to ask “are you thinking...” or “how…” than to say “you should/you have to...” first.  Yeah?  With cancer or life in general, I have found this to be a great rule.  For instance, people might assume --because I’m a long-time organizer, director, planner-delegator and a make-things-happen kind of person--  that I want to coordinate the effort around support through this next phase of my journey.  The answer to that would be a definite NO.  I nearly jumped for joy when my friend Audrey came over with their amazing bread AND with their laptop - to show me spreadsheets they will create to have friends/family access on their own to offer myriad types of support.  Hallelujah and HELL YEAH!!!   I LOOOOVE when other people plan have no idea...

  • Let’s talk as usual, as “normal” -> After quite some time of hanging out with my friends Sue Jin & Matt, I asked Sue Jin how this kind of news feels to her.  I wanted to know what she was thinking and wanted to make space for how odd it can be for the friends to hear this news.  Then the floodgates sort of flew open.  She told me, as soon as she walked into my home, she had wanted to ask me and tell me a ton of things - “What’s next?”  “What do you need?”  and so on.  She added that she is still processing this and also wants to “be normal with me.”   So, here’s my thinking - this is a new “normal” for me.  Hell, I’m at the beginning stages of processing this myself - it’s only been a month since diagnosis...i haven’t even had my first MRI yet.  It doesn’t define me in total, but it will impact me for the rest of my life.  There is that point before cancer, and the point from which we turn toward fighting and surviving it and, dare to say, thrive in the long run with it.  So, again, let’s speak freely and converse as usual - with laughter and curiosity and utter honesty...on deep shit and silly stuff...let’s have FUN and be real...with cancer, with life.