No, it's not more cancer. At least not that I know of. New scans in a few weeks, so I'll have the answer to that then. I'm talking lymphedema. An uncomfortable at best, debilitating at worst, side effect from my double mastectomy and the removal of lymph nodes.
In a previous post I talked about worry, and how lymphedema was at the top of my worry list. Before I was officially diagnosed with inflammatory breast cancer (IBC), during that initial waiting period when you're supposed to stay away from Dr. Google and the hoards of Internet posters with so much conflicting information it makes your already spinning head feel like it's gonna pop off, I read a quote, "Worrying is like praying for what you don't want." It struck a chord with me then and helped change my view of worrying a bit. I stopped worrying as much as I used to, especially about the little things, but my worry about lymphedema never went away. So maybe my "prayers" were answered, or maybe, like cancer itself, the side effects, from mild to severe, are equally unpredictable.
I was understandably upset by this new diagnosis of lymphedema. It happened to be April Fool's Day and yes, part of me was hoping that this was just one colossal prank the universe was playing on me. But it's real and devastating to me. Especially because, like my cancer (IBC), the symptoms seemed to develop overnight (starting with a swollen thumb, then the next morning, moving up my arm. Plus a discoloration on my upper arm, from the pooling of fluid), giving me no time to process anything before jumping in to try to find treatments. What I did two years ago, and what I did on April 1st, was take to the Internet to try to find people who share my experience, to get stories, tips, and, most importantly, to know I'm not alone in this. While most people were more than willing to be helpful, I was shocked at a few responses that were downright mean. Telling me, "At least it's not a tumor," "Wow, sucks for you," "That's life." Yes, all true, but for the past two years I've had a shitstorm of cancer, treatment, meds, and side effects try to take me down at every turn. I was finally starting to get used to my "new normal" when bam, something tries to take me down again. And I'm upset about it. And I have every effing right to be.
I'm scared. I'm in pain. I don't know what to expect, and that makes me anxious. I'm 32 years old living with stage four inflammatory breast cancer, constant pain and exhaustion, and I just want it all to stop. With time, I have become accepting of my place in the cancer world (though I have my hissy-fits and pizza binges every now and then), and every new thing just rocks me to the core.
I like change -- it helps lead to growth, and to the opportunity to experience a more fulfilling existence. But too much change too fast just makes me want to bury my head in the sand, let the world go on with out me, and give up trying to play an active role in the direction my life takes. But that's not who I am at heart. I might take a day or two, but then I get up and look for what I can control in a world that seems to endlessly try to control every aspect of my life, physically and emotionally. Part of that means reaching out to others who have experience and trying to take their answers and mold them to work for my situation. Sometimes it works, sometimes it doesn't. But it's something to do, and I have to try.
While yes, the diagnosis of lymphedema "could be worse," not acknowledging how flat-out sucky it is does a disservice to how strong we are as human beings, and our coping mechanisms and ability to deal with life when it gives us those lemons, and to all of the people out there who are already dealing with it. I have to believe I'll be okay, once I find a qualified lymphedema therapist who can help me try to tame the symptoms. I know I'll have to make changes, but I'll also be able to get back to doing, at least some, of the things I love -- just with some adjustments. But first, I have to respond to this new curve ball life has thrown at me. Just as I did when I was first diagnosed with IBC, and again when I had a double mastectomy, and a third time when my cancer spread, I need to mourn.
A change means saying hello to a new way of being, a new way of doing things, and goodbye to the old way. In order to fully transfer your energy to the new, you need properly detach yourself from the old. I need to mourn the loss of time. Time taken out of my life, out of my daily schedule that made me feel "normal" again, to get treatment, to add in even more doctor's appointments, to work up the nerve to ask my friends to take an even more active role in helping me live my life, while I take a step back. Mourning the opportunity to dictate when and how I want to spend my time. Mourning one of the only parts of my body that I didn't experience pain in. Mourning the loss of yet another new normal.
But, like everything else, the mourning period will end and I'll move forward and find another new normal (this will be #4, but who's counting?). I look forward to getting to a place where I can share my experience and help others with their diagnosis of lymphedema. I look forward to getting outside, now that winter is over (it is over right? Please, please tell me it's over!), and getting back to spending my days with nature and the things that make me feel like, well, me.
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