So first things first, – my medical update. I am finally starting to feel better from the pnemonia. Thank the good lord. It’s going to take me a while to get my strength back, but I’m happy that I can start building it back.
Medically, things are weird. I got a voicemail from my pulmonologist that something lit up on my lung on my last scan, so of course I completely panicked and figured that meant the cancer has spread to my lungs, which it might have. We have no way of knowing right now. She said that it might be infectious, could be cancerous, or it could have lit up as a result of a part of my lung that has collapsed – this also showed up on the scan. Um…..wtf? This was all in a voicemail and sounded far too casual for my liking. Lung tumor? Collapse? So, I’m trying not to panic, and figure that slowly getting my strength back can only help things to heal. I still get pretty short of breath doing the smallest amount of activity, so I’m trying to take baby steps, which for anyone who knows me knows is reallllyyyyy hard for me. I get excited, and have a hard time taking things slowly. BUT Evan has taken on the role as my personal trainer and he’s keeping me in check :).
My last brain MRI was stable, though Stanford said they wanted their lepto specialist to review it. I’m not sure what this means. I feel like they are always worried about me and lepto. Trying not to panic. Unfortunately my neuro symptoms have amped up again, so I’m getting another brain MRI as soon as they can schedule it.
I am also like 50 emails/texts/vm’s/fb messages behind, and while I have read all of them and appreciate the support SO much, please just be patient with me. Now that I’m getting better from the pneumonia and can handle short bursts of screens again, I will start making my way through them. I feel terrible that I have been ignoring everyone, and I’m terrified that people will stop reaching out due to my silence. Please know that if you sent me something that I never responded to – I got it, I read it, I love you for it, and I will respond soon. Thank you.
Ok, on to the actual meat of this post. I was able to go to the LBBC conference on metastatic breast cancer in Philly in April, where I participated in an advocacy training program called Hear My Voice. This was my first big conference. My friend aptly said at the end of one day, “I’m so exhausted. I’ve felt all the emotions every minute of today.” It’s a pretty accurate description. It was inspiring, educational, and so nice to connect with others in my situation, especially those who I have been communicating with online but never met in person (until now), but it was also exhausting being surrounded by cancer stuff nonstop all weekend, meeting a ton of new people, and having to cognitively focus all day – all while recovering from the flight and trying to manage my neuro symptoms. I have a hard time processing conversations these days as I start to get tired, which, combined with the headaches and nausea, can make a weekend like this challenging. At some point my brain just shuts off, and I kind of power down.
I also went to my first METUP die-in at the conference, which was, well, basically all the emotions. We listened to a few really interesting speeches on the disparities in MBC research/treatment (something that desperately needs correcting), honored those who have passed, and then laid down on the ground while a bell was rung 113 times to symbolize the 113 men and women who die every day in the US from MBC.
113 is 113 too many. I don’t even know what more to say about that anymore, what to say that would make people care, that would inspire action and change. We are tired of being in pain, tired of watching our friends die, tired of dying.
I flew out and roomed with April (of Wildfire Magazine), who is one of my closest friends, so she took care of me when I was sick, and it was sooooo nice to be able to relax in the evenings with someone who knows me well and understands all of my issues, especially after some of the emotionally draining events. Plus, she’s awesome and fun and I love hanging with her, so good times. I also met an amazing new friend, Emily, who I have quickly come to love. All in all, despite how much I enjoyed the conference, I was also definitely appreciative of getting room service in pjs at the end of the day with two friends who make me laugh.
Unfortunately the flight home was BRUTAL – like, drove home from SFO with a plastic bag in my lap, wondering if we should go to the hospital kind of brutal, so I’m feeling like I should stick to road trips from now on. That is, of course, until someone calls me and tells me that Michelle Obama is going to be at a BC event and that I might have an opportunity to meet her. Then I’ll be on the next flight with all my anti-nause and pain meds in hand. 🙂
Ok, on to my advocacy thoughts inspired by the weekend:
I learned a lot at the conference about the different types of advocacy, and it got me thinking about just how many varying worthwhile approaches there are. There is something for everyone. It doesn’t matter what your strengths or skills are, there is a place for you in the advocacy world; there is a way that you can improve the situation for those of us with MBC. You don’t have to go on the radio or fly to DC to lobby for funding (though both of those are awesome options, of course). You can make a phone call to your elected official, or talk to the people in your life about metastatic disease and help correct all the misinformation out there, or support a friend who is going through it in a more one-on-one way, or put together a couple of care baskets. There are so many options, and all are appreciated.
I think what is also important to remember is that 1) the MBC community needs all the help we can get, so even if someone is misinformed, there’s a way to help correct that misunderstanding kindly and with respect, rather than with frustration, anger, and/or judgement. Far too many people just don’t know about MBC. I didn’t before I got it. 2) Sometimes it’s not a matter of inaccurate information, but rather of differing advocacy styles. There are a hundred different types and styles of advocacy – all of which are worthwhile and needed – and I hope that we can start to be a bit more appreciative of everyone’s efforts, because no one’s efforts are any more legitimate than anyone else’s. Whether you are into story telling, fundraising, political/legislative action, education (one on one, or on a bigger scale, like book projects), supporting patients/loved ones, making care packages, media efforts, public speaking, participating in events like conferences, volunteering for an MBC non-profit, or some other activity that I haven’t thought of – it’s all important and helpful.
There is also an unfortunate divide in the breast cancer community between metastatic and early stage patients, which is often at play here. I understand that early stage patients can feel scared by us metsters, because, let’s be honest here, no one wants to become us. The fear can manifest into some unhelpful at best, unkind at worst, statements. On the other side, metsters sometimes get frustrated by the lack of accurate knowledge about metastatic disease that some early stagers have (we need to work hard to correct this – far too few early stage patients get well-educated by their docs about metastatic disease).
The result is that everyone retreats into their respective community and gets angry with those on the other side. Which does very little to help improve the situation for metastatic patients, or any breast cancer patient for that matter.
Side note: I recognize that this may not be a popular post. I’m prepared for that backlash. But I feel that it’s important to say, so there it is.
The reality is that the metastatic community needs as much help as we can get in advocating for better treatments, services, support, more research, more funding – all of it, so that we can live better and longer lives. We need to help each other, and we need help from those who don’t have metastatic disease. Plus, all this actually benefits those who haven’t metastasized, too, because the better we understand metastatic disease, the more likely we are to be able to prevent metastasis. And, as I’ve said before, finding better treatments for metastatic disease could take death off the table for ALL breast cancer patients, which would be a complete game changer.
Due to the reality of MBC, at some point each of us metsters will likely reach a point when we are too sick to continue with our advocacy efforts. That’s why we so desperately need other people on our side, people who will pick up where we leave off and continue the fight for us. We can’t do this on our own. We need more people in our corner. A bigger crowd to stand with. Let’s welcome them into our community.
Those of us with MBC do EVERYTHING we can to try to save our own lives, but we need help – help buying ourselves more time. Precious, sit in the sun, giggle with our nieces, cuddle our spouses time.
So, to all of you out there already working on behalf of the mets community, whether or not you have MBC:
we need your help, welcome, and thank you.