Wednesday, April 8, 2015

For my bff since the third grade

I was talking today to the friend above, and she wondered why I haven't been writing.  She is highly intelligent, and thus knew to use the ultimate tool - flattery - to tell me I should write more.  No excuses here, except lack of discipline and no lack of Breaking Bad episodes (Yes, it is my second time.  No judging please).  For now though, I had an aha moment.  Said friend does not like using "the facebook," so I knew I had a few little vignettes she had not read.  

As an intro for my social-media-averse readers, a woman in my support group started a social media campaign using hashtags (L, I hope you know what these are - hehe) to make the topic of metastatic breast cancer "trend," creating a very broad awareness of the disease.  She borrowed metsmonday from a fellow blogger who started the Monday posting of facts and feelings related to mbc and added multiple hashtags to enhance the chances of mbc hashtags trending towards the top on specifically chosen Mondays.  It worked!  The first time it did actually trend, which is an amazing result of how many people participated and shared.  And just in my tiny social media world, people have donated to the organizations I have mentioned. These have been my postings, including hashtags, so far. 

Tomorrow night I head to Philly for Living Beyond Breast Cancer's 9th Annual Metastatic Breast Cancer Conference.  Additionally I will do an all day training on advocacy on Friday with a smaller group.  I am excited to meet many of the women from my support group.  Many of us have never met in person, which is odd given the TMI topics discussed (constipation! diarrhea! highly personal menopausal symptoms for young and old! and, you know, the serious stuff like death and dying). These women are supportive, empathetic, knowledgable, hilarious.  I will report on what I learn and whether the more raucus of the group get complained about by other hotel guests.  For now, here are the short bits I've shared on Mets Mondays so far.

It's ‪#‎metsmonday‬.
With metastatic breast cancer there is no battle to be won or lost. There is no "fighting like a girl," which frankly just infantilizes and trivializes the experience of having mbc. There is the day to day staying as healthy as possible. There is science, that needs to catch up with us patients. And there is the opportunity to get money to those scientists wishing to solve so many of the mysteries surrounding this disease. There is making sure that whatever money you contribute to a cause you know and appreciate what it will be used for. For me, that is research and advocacy around metastatic breast cancer.  

It's ‪#‎metsmonday‬ again. Many of the over 1000 women in my support group had stage 0-2 intitial diagnoses prior to their metastatic diganoses. Many were beyond, some way beyond the "five year mark" and even "ten year mark" at which point cure is often assumed. Early detection without lymph node involvement is better prognostically, but is not a guarantee of a recurrence free life. And finding a lump when it is small does not mean one does not have lymph node involvement, nor does having no lump at all mean there are no cancerous lymph nodes. It is possible to have breast cancer without a tumor or tumors in the breast. Many of the younger women in my group and some older were diagnosed with stage 4 from the start. This is not because they ignored any signs, were "unaware," or did not do preventative care. All to say there is no scenario or step-by-step instructions for not ending up in my boat. There is much more randomness than one might think. So instead of giving to "Awareness" causes (I believe we are aware enough), give to causes that are looking for treatments, cures, and doing quality of life advocacy for metastatic breast cancer.  ‪#‎metavivor‬  ‪#‎livingbeyondbreastcancer‬  ‪#‎mbcn‬

It's ‪#‎metsmonday‬ again, and I'm kinda tired. Basically I always am. Treatments, even those that are not chemotherapy, have their own side effects. I am on infusions of pertuzumab and trastuzumab, two therapies that target the HER2 protein that drives my particular cancer. These can cause fatigue, muscle pain, runny nose, irritated eyes, diarrhea, nausea, vomiting, anemia, neutropenia, increased coughing, pulmonary toxicity, cardiac failure, bla bla bla. Nevermind the longterm effects of past chemo, surgery, and radiation. Basically I feel a lot older than I am, like twenty or so years older. I really feel for all the young twenty- and thirty-somethings dealing with this crap (and there are a shocking number of them). They feel older too, much older. Many have young children, or will never be able to have children, or are just getting started in careers and marriages. Still, I am so grateful for the research that brought me my drugs. I am grateful for feeling as well as I do, and I am grateful for continuing research and scientific breakthroughs that will give me and my metsisters more options down the road.

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