I first met Beth in 2003, when she was out visiting from D.C. (that rhymed). My friend Dana introduced us and I've been lucky enough to stay in touch with her ever since. Beth is one of the most generous people I've ever known and meeting her for lunch, or coffee or a drink when she comes to town is enough to keep me vibrating on a higher frequency for days. The woman personifies what it means to fight hard and fair for what you believe in and do so with grace humor and the strength of a thousand fists, which is why she's such a successful organizer for worker's rights, as well as the object of admiration for so many, myself included. I've always felt incredibly blessed to know her and right now, that feeling is at an all-time high because girlfriend is a true force to be reckoned with. Clearly "Cancer" has no idea who he's messing with.
Friend since: 2003
Type of Cancer: Stage 4, Grade 3 Follicular Lymphoma
Diagnosed: July, 2011
Age: 36
GGC: First of all, you are Beth and you are awesome. Can you tell the folks at home a little about who you are and what you do and what kinds of things make you happy?
Beth: I am a sensible, 36 year old, Midwestern lady living in the very unsensible East. I do social justice work and am frustrated to have cancer and be less active during this incredible time where the dialogue about class and corporate control is happening in our streets. I like pets, good meals, and giving gifts to the people I love.
GGC: When were you diagnosed with cancer and what have your treatments been like since?
Beth: I was diagnosed in July and my awesome oncologist quickly got our treatment plan together and set me up with a great team of radiologists and others to make sure we beat the fuck out of this disease. I’m on R-CHOP, a chemo cocktail that is a 7-8 hour infusion every three weeks followed by 5 days of 500mg of the steroid predisone. The predisone is really awful: can’t sleep, makes me sick, moody, and generally unpleasant to live with.
The worst part of chemo has been getting admitted to the hospital one week after every treatment with neutropenic fever. Basically, my white blood counts drop to dangerously low levels and I can’t fight infections so the doc likes me to be hooked up to the things that fight that sort of thing. I like living, so we just roll with it as much as possible.
GGC: Professionally, your job is to empower, unite and organize. I wonder, then, if your work experience in kicking-that-ass has enabled you to kick cancer's ass with the same aplomb. YOU are your union, you know?
Beth: I think it gives me a way to look at the treatment process differently than most people, because I’ve been trained to be action oriented and I make strategic campaign plans for the most seemingly unwinnable battles. I wrote a cancer plan that is complete with goals, strategies, and tactics for surviving and coming out as a better person. That plan* is my foundation, I try to read it most everyday and remind myself of what I haven’t accomplished yet and take some credit for my successes so far.
I also think that because most of my support system are also organizers, they approach helping me with a plan and aren’t scared off by something as awful as cancer. I mean, they aren’t even scared of Walmart.
I was reminded of the coolest thing about my army of a support system when a coworker/friend said, “solidarity isn’t just for picket lines.” That just sums up the way my particular breed approaches life.
*MY GOALS:
1. Survive
2. Come out with Deeper Relationships/More fulfilling life in general
3. Come out feeling more capable/better/improved
4. Maintain realistically positive outlook
5. Maintain a balanced/Healthy Lifestyle
GGC: It took several months for it to actually hit you that you had cancer, a moment you wrote (on
your blog) was very transformative for you. Can you explain?
Beth: I’ll try. I think when I first got diagnosed I was trying to manage everyone else’s reactions and concerns. I got a bit stuck there. I think I had sold myself this reality that I was just going through some shit and it wasn’t that big of a deal. I thought that I was making it so that other people didn’t have to worry about me, but really I just wasn’t worrying about myself. I think it was probably pretty healthy and necessary to protect myself from the real fucking possibility that this thing could kill me.
Recently, I had a visit from a large group of old friends and wound up spending the bulk of their visit in the hospital. It just destroyed me. I hated not being in control of it. I lost it. I was completely powerless. I let myself be alone with those thoughts and that real understanding that this life is totally fucking awesome and I didn’t want to be taken from it or from this incredible group of people that love me.
That rawness and pain brought me into this new perspective that is making me appreciate what I have so much more than I ever did before. I’m embarrassed by how much I still take for granted, but I am trying to slow down and respect what I have more now. That exercise is making me feel more in control than I ever have before.
I’m not sure if any of that makes sense. I guess it is facing the fact that there are very few things that we actually have control over, and to stop pretending or trying to control the ones we don’t is liberating and empowering.
GGC: What's it like to lose your hair? And when it comes back, what are your plans for styling? (Ha!)
Beth: I thought I was prepared for losing it. I had shaved my head before, you know, I was once a college lesbian. But in actuality, I was so totally unprepared for it. When it started to fall out, I felt so weak. I was not in control and that mattered a bunch to me, so I immediately shaved it off. Back in control.
I’m lucky, I have a really nice head for bald. But I also got a gorgeous and totally pricey custom wig made in New York that makes me look just like my old self when I care enough to wear it.
I hope it grows back different, maybe straight and blonde or really curly and red. I have heard that can happen. I’m also hoping that my friends (read: you) will help me learn to be a real girl after all of these years and teach me how to style my hair. If that doesn’t work out, I’m going to go full on butch, with a seriously badass pompadour.
GGC: You also wrote about "control" and that it's okay for us to remind ourselves that NONE of us are in control. That we might "...get robbed of some really important times with really important people.” That it's okay to be pissed the fuck off because cancer is a total dick. And yet, by reading your blog it sounds like relinquishing control helped you gain some. How has feeling powerless empowered you?
Beth: I feel totally powerless. Even with the good news this week on my PET scan, I know that it can come back with full force in just a few weeks time. Really though, I could get into a car accident or slip and fall and have an aneurism. While that is totally scary, it does allow me opportunity to just live in the present.
Cancer sucks so bad, and I’m more likely to die earlier with this diagnosis, and that means I’ll lose some amazing moments. I think in actuality, I haven’t enjoyed many moments fully in my life because I’ve been preoccupied with the past and future, or whatever is on television.
This powerlessness has given me permission to slow down and live a little bit more, definitely makes me feel more in control. At least for now.
GGC: How has this experience changed your relationships? With your friends? Family? Girlfriend? How has it changed your relationship with yourself?
Beth: My relationships overall are more honest. I’ve always used humor to deflect when things get a bit too real and deep. It’s a common coping mechanism I think for people who don’t totally trust themselves. At least that’s why I think I do it.
I very rarely open up with my friends and family about the things that bother/scare/intimidate me. When I made the cancer plan, one of the main tactics for accomplishing my goals was to trust. Its so much harder to do than to write on an excel spreadsheet.
Starting
the blog was supposed to be a way to disseminate info, so that it wouldn’t be such a pain to have to explain to so many people one on one. It very quickly became a way for me to process and open up with the people who care about me, or at least bother to follow along.
My relationship with my girlfriend has gotten so much better, I let her take care of me now when I need it. It’s amazing what some equity and openness will do for a relationship.
My relationship with myself is harder to know. I’m not sure, I feel a bit stronger emotionally. Not because I’m fighting cancer really, just because I’m choosing to fight the demons that have been keeping me from truly living. Though knowing my demons and writing about them on the internet doesn’t make them go away, and in some ways, that exposure and vulnerability make me feel weak. Check back in a few months for an update on this.
While it seems cheesy and too sincere for me, I have to say that I think cancer overall has been a gift. I feel more in touch with my life and more comfortable in my own skin. Except for the effects of chemo, which are completely uncomfortable and awful.
GGC. As of yesterday you are *this* close to being cancer-free. How do you plan to live differently? Or is your plan not to plan? Will you be going to Disneyland? Turning your wigs into a modern art piece? Let's hear it.
Beth: ...Unfortunately, my road ahead has 2 more chemo treatments followed by a bone marrow transplant that will require many weeks in the hospital and roughly 6 months total out of work/life. Ick.
I definitely have a plan. I want to get back deep into work and figure out what parts of my job that aren’t specifically about conflict and try to spend more time doing them. Constant conflict is hard on the soul. Additionally, I will continue with my cancer plan in my post cancer life, maybe even add a few new goals.
As far as vacations/adventures, we’d like to take a California trip for a few weeks where we spend time traveling the coast and seeing friends when chemo is done. After the bone marrow transplant, I’d really like to go to Greece.
GGC: Describe the last three months in 140 characters or less.
Beth: Junior Soprano called cancer "the Big Casino." Jackpot so far: visits with friends, delicious meals, and copious vomiting.
GGC: Lastly, if you could give your pre-Cancer self life advice, what would it be?
Beth:
Dear Beth of July 2011,
I have some advice for you. Trust the people that you have surrounded yourself with. There are no bad days that won’t be made better by telling someone ALL about it. Your friends will make it better and keep you laughing. And say thank you more, you damn heathen.
Love,
Beth of November 2011(Thank you, Beth, for sharing your life with us. You win and I love you.)
... Beth is blogging her journey to cancer-freedom, here.
GGC
