I knew Maggie was a force of nature. A force of fierceness and humor, of insight and brilliance, of dance and joy. I knew she was doing an incredible amount of work by starting Maggie’s Brightside and turning it into something really legit. As I read her blog posts over the years, I was struck by how kick-ass it was and wondered how in the hell she had the energy to do all that while dealing with the cancer and also being an amazing mom, wife, sister, daughter, friend, Zumba dancer, rabble rouser, and more.

 

Since starting as the executive director of Maggie’s Brightside a few weeks ago, I feel like I’ve been on a treasure hunt of Maggie’s awesomeness, with each day uncovering a bit more. Learning of all the peoples’ lives she touched, of all the businesses she inspired to give. But before I talk more about where we are going with Maggie’s Brightside, let me tell you about me and how I got here.

 

I will never forget the day I met Maggie. It was in the basement of the former Sheraton at a cancer conference and I was speaking on a panel of young survivors. She was sitting in the front row, fully engaged the entire time– I even remember that classic Maggie smirk on her face. My whole speech attempted to combat the ‘rah-rah!’ cancer positivity vibe I consistently encountered, and I essentially said, “Don’t let anyone tell you that you have to look on the bright side of this.” Afterward, Maggie approached me and kindly suggested that we should be friends but that I should know something first— she had a blog, Maggie’s Brightside. I couldn’t help but laugh and promised I would try to let some of her positivity rub off on me.

 

When I had the honor of speaking alongside Maggie the following year at Stowe Weekend of Hope, I felt we balanced each other incredibly well– bringing both the bright side as well as the message that it is ok to not feel ok when you have cancer. But Maggie really held all of those emotions so well herself–allowing the space for the good and the bad, the anger and the joy. If you haven’t read all her old blog posts do yourself a favor and start at the beginning and go from there. I believe this “both/and”*(see note at bottom of post) of emotions is crucial in the cancer world, and not “either/or.” For example, when I got my last set of scans which were all-in-all decent, I certainly felt both grateful to still be here AND disappointed all traces of the cancer and the effects of radiation weren’t magically gone from my body.

 

Let’s go back to my cancer beginning.

I lived with chronic and severe atypical head pain for 15 years. It was misdiagnosed as a rare neurological condition, and what was actually a small, slow growing tumor in my eye socket was completely missed by two different radiologists on three different scans over the course of several years. Then, in the fall of 2015 when I was pregnant with my daughter, the tumor grew big enough for me to palpate below my eyeball. After my local radiologists saw it on my old scans, I was hopeful that something hanging around for so long would be benign, but the initial pathology came back as an “aggressive malignancy.” I had to wait two additional weeks for the final path to come back as synovial sarcoma, an extremely rare soft tissue tumor (I really am one in a million!).

Jane face pre surgery

Face prior to surgery and removal of tumor

Jane with radiation burn on face

Face post surgery and after two months of radiation

 

 

 

 

 

 

 

 

 

 

Before I got that final diagnosis and waited for my official ticket into the cancer theme park (I couldn’t schedule a visit with an oncologist until I had a definitive diagnosis), I focused on the life-changing effect of my surgery. The tumor was enmeshed in one of the muscles that moved my eyeball so the surgeon removed the whole muscle when taking out the tumor. As a result, my left eye can’t move in sync with my right eye, so I have permanent double vision (diplopia). My options were to wear a full eye patch, or get glasses with a fogged lens on one side (I don’t otherwise need glasses). Wearing the glasses has been a hard adjustment as they are just “not-normal” enough for people to often ask why one side of them is fogged up.

It’s an emotionally difficult daily reminder of the normalcy that cancer has taken away from me.  

 

Once I finally saw an oncologist a PET scan was scheduled to check for metastases. Thankfully there were none, though margins from surgery were positive. PSA for anyone reading this who happens to be a parent or caregiver of a young child and needs a PET scan: they didn’t tell me ahead of time I couldn’t hold or be near my child for the better part of 10 hours after the scan, so save yourself some stress and plan accordingly.

Jane babywearing with cancer hat

At least I got a free cancer hat out of it!

Everyone involved in my case (my UVMMC medical oncologist, head of radiation oncology at UVMMC, surgeon, Mass General Hospital (MGH) orbital radiation oncology specialist) agreed that given the location of the tumor site, specialized proton beam radiation after surgery was the best course of treatment. The closest site for this type of treatment was MGH. Unfortunately,  despite so many esteemed doctors being in agreement and expert testimony being provided, my health insurance provider denied coverage for treatment three times. For the final appeal I had to drive to the Blue Cross Blue Shield headquarters in Berlin, VT and present my case in person to the medical director and other administrators. I had to exhaustively research my 90+ insurance plan document, coordinate the schedules of several doctors to participate by phone, and explain why that treatment was necessary. They finally agreed, but the process delayed my start of treatment by a month and caused huge amounts of stress, frustration, and fear that each passing day gave the cancer cells more time to spread throughout my body. Sidenote: there have been recent lawsuits involving the denial of proton radiation, some here and here.

 

Being approved for treatment meant having to move from Burlington, VT to Boston for two months of daily radiation. My daughter was five months old at this point and I was told no one under 18 could stay at Hope Lodge and that the Ronald McDonald House was only if the child had cancer. Thankfully I had a tremendously generous person in my life donate housing to me, but I thought every day about the impossibility of acquiring care had it not been for her unbelievable gift.

 

Every weekday from January to March 2016 I was bolted into a face mask that was so tight I couldn’t breathe through my mouth. The room was dark. They let me pick the Pandora station that played overhead (Adele, obviously). The treatments only lasted about 15 minutes each time, but that is way too much time to lie completely still and wonder how long I would live for. Wondering how old my daughter would be when I die. 1? 5?  20?

 

One positive aspect of treatment is that it gives you a concrete task to do every day or every week. Something to focus your mind around and feel like you are at least doing SOMETHING to kick those cancer cells in the ass.

Prior to having cancer I had no idea there was a bell to ring upon treatment completion. For me this felt obligatory and uncomfortable. There was no yet knowing if the radiation had even worked. But I know for others it is an important way to mark the end of treatment – if they are lucky enough to get to that point.

Jane and family ringing bell

After my radiation course finished I felt quite lost. Aimless. The only thing on my calendar was a scan in three months to see how things looked post-radiation. Thankfully another patient in the MGH waiting room had suggested I talk with a social worker there before I finished treatment. She was great and was the ONLY person to tell me to expect post radiation fatigue. She also suggested I seek out a therapist in the cancer center when I returned to Vermont to help with adjusting to post-treatment life back home.

 

Thankfully my cancer center does have embedded therapists– who know all about scanxiety, survivor guilt, and so much more that comes along with a cancer diagnosis. I am still frustrated that it took me so long from the time of getting my diagnosis to learning about the resources that exist in my cancer center. I know there is much work to be done in order to ensure people have access to such support far earlier on their cancer path (spoiler alert: I’m hoping the Resources page on https://maggiesbrightside.org/resources/ can help with this).

 

So now, over three years out from finishing treatment, I continue to watch and wait. I get my scans every six months and hold my breath each time until the results come back.

But it’s not quite that simple–living in what I call the “cancer ricochet.” At times cancer does feel like a large projectile force that has hurled my body (and life) into various surfaces/collisions. It is difficult not knowing when and how the next collision will take place.

For me, an example of this is that my left sinus was in my radiation field (part of the otherwise healthy area of tissue that the radiation passes through to get to the affected area). This caused my sinus to be understandably pissed off, and start producing (thankfully benign) gunk that had to be surgically removed. And now each night I get to squirt a warm, stinging solution up my nose for the foreseeable future. Not my favorite.

But therein lies the “both/and” again. I get to complain about the shittiness of the cancer ricochet and also be grateful, deeply grateful, to still be here on this earth.

 

That was a long story, and if you’ve kept reading, thank you 🙂 It does lead me back to Maggie’s Brightside and why it is so important. I was thankful to be in Vermont when I got diagnosed. People rallied around me and my husband in a way that baffled my mind. They dropped diapers at our doorstep, did a meal-train, and welcomed me home from radiation with a front door covered in supportive post-it notes. My husband called this support “relentless,” in the best possible way. Constant, unstoppable, unceasing.

Door covered in post its

To me, this is what it means to be a Vermonter. We take care of each other. This is what Maggie’s Brightside does. We make sure that, especially for people who may not have a broad support network in their own lives, we rally together and show up for those dealing with cancer and try to make their day a little brighter.

 

To keep Maggie’s legacy going this will take all of us. I know we can shoulder this responsibility together. So remember to spread that laughter, joy, and sunshine.

See you on the Brightside!

Jane

 

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*I should say this both/and concept, at its root, is something I learned about in college as part of Black Feminist Thought. Look up Patricia Hill Collins if you want to get all academic about it 🙂