Have you ever wanted to feel like the least-educated or least-intelligent person in the room? Go to a scientific conference, like I did last week for the Melanoma Research Alliance’s annual Scientific Retreat. Biology and chemistry zoomed by me in a flurry of industry terms: Heterozygosity? Intratumoral immunity?? Agonistic anti-CD-40 antibodies??? What the heck was did that just mean? At some point, I stopped taking notes; there were too many words to look up.
It’s not like dorky stuff is new for me; besides working in IT, I went to a school widely considered among the nerdiest and geekiest out there – CMU’s biggest football crowd was the game they passed out free floppy disks. For you kids, floppy disks look like the “Save” button and were the best way to keep data back in the Stone Ages, and your Facebook profile picture probably would be too big to fit on one. Unless, of course, it was double-sided, double-density. I digress… before I turn into my Dad.
So when I sat down amongst many of the brightest names in melanoma research and development, I figured I would be in over my head. What I didn’t realize was that the ceiling cathedraled so far up. The MRA brings together top-of-the-food-chain types from various academic, pharmaceutical, industrial, and governmental stakeholders in melanoma treatment — plus one fish-out-of-water dude with a laptop, a blog, and some receding tumors (there were a few other patients there, too, so I wasn’t entirely alone in this). They spoke a language I kinda-sorta barely understood; it’s like watching Telemundo after one year of high school Spanish.
Ever Google yourself? Back before Google got into tailoring your every online action, it was fun to see what popped up. Now, when a search reveals the unexpected, it is a bit refreshing. A month ago, I set up a Google news feed for melanoma, and have been reading and saving interesting links to potentially include here on the blog. Last week, the very last link in the feed was the Patient #1 interview with Catherine Poole.
Between that and being a part of the MRA’s Scientific Conference last week, it finally REALLY sunk in. I’ve started the transformation from patient to… well, something. Blogger? Media member? Survivor story? Advocate? Maybe a little bit of all the above, although I wonder if I am bringing down each of the aforementioned groups. I’m not really ANY of them, at least at the highest level. An advanced thank you to those who believe otherwise about “blogger,” but until this is more (and more often) about cancer and less about me, I’m not taking full credit just yet. Same with “survivor story”… yet.
Still, being a footnote in the melanoma community and media world is equal parts amazing and humbling. Quite a few people came up and told me they read the blog during the conference, and I realize this medium is therapeutic for both me and others. A fellow patient relayed his story – reading this blog last summer, years after his initial diagnosis, and then finding out he was Stage IV soon afterwards. I get those kinds of emails more than I expect — people who relate to what I write, which itself is equal parts uplifting and disheartening.
When a cancer diagnosis happens, the initial shock is quickly followed by an avalanche of information. Some comes from oncologists, some via well-intentioned family and friends, and a whole lot from Doctor Google. It’s a daunting task for even the most educated of medical professionals, and nearly impossible for the Average Joe to digest. Along with everything else in your world getting turned upside down, patients now have to make life-or-death decisions based on multiple sources that often conflict, while trying to understand what the heck just happened to their “Happily Ever After.”
There are people whose job it is to help facilitate that information for you. Patient advocates are the voice for those who need to navigate that decision process but could use assistance sorting through the minutia. Catherine Poole is one of those people.
A melanoma survivor, she began the Melanoma International Foundation (MIF) after experiencing the difficulties described above with her own treatment. She reached out to me last year and asked if I would be able to make their annual Safe From The Sun walk and accept a Patient Advocate Award. What I received that day was a nice glass trophy, but what I really got was access to an expert in the melanoma arena. It came at the absolute right moment, as we were looking for a Plan B after my first trial was unsuccessful. Catherine spent several hours going over options with us, and helped us find the Holy Cross trial that we eventually chose. Without her assistance, I don’t know how I would have successfully gotten to where I am now.
Being a patient in recovery has a LOT of small advantages — “silver linings,” I called them in one of my first blog posts. You are afforded significant leeway, and the amount of support offered and given is often way out of proportion to what is really necessary or even deserved. The optimistic tone that has been one of the mainstays of this blog is a lot easier to maintain when the world around you is doing everything it can to make your life as painless as possible.
Sometimes, though, the kettle boils over – the emotional difficulties of this journey don’t allow every worry to just dissipate with an eventless infusion or even good scan results. The morbidity of the situation can’t always be brushed aside with optimism or laughed off with gallows humor. For every miracle story of decades-long survival, there are exponentially more sad endings.
Being an active member of a Facebook Melanoma group and reading different melanoma sites, I get a pretty good idea of how people are faring against this disease. You know what, it’s not good. Bad news comes often – scans show disease progression, brain metastases appear, someone is back in the hospital, etc. It seems like nearly every week, we mourn the loss of one of our own. The down side of a support group is that it is not immune to reality, and sometimes that reality comes from unexpected places.
Raise your hand if, diagnosed tomorrow with a serious illness, you would be interested in the most advanced, cutting-edge treatments available? I’m betting there are lots of you… good. Keep those hands up if you know where to find those treatments. Ok, ok, probably still a decent number of you.
Now – suppose you are sitting in your doctor’s office looking at scans, or blood tests, or even worse, doing these things in the hospital preparing for/recovering from surgery. Say your doctor told you the “standard of care” was Drug A, and this option was preferable to Drug B, C, or D, and “we should get started soon.” Would you know enough to ask about Drugs X, Y, or Z – ones that haven’t made it onto the market yet because they are still in the clinical trial phase? If you are in the 98% of Americans who undergo standard-of-care treatments, chances are, you may not.
I got an opportunity to do my second panel discussion in the last 10 days, at the SCOPE Summit in Miami. The conference brings together stakeholders from the clinical trial landscape – pharmaceutical heavyweights, research institutions, clinical research operations organizations, biotechnology companies, and others in the healthcare field. There were about 600 people registered, and the conference included the typical “exhibit hall” set up with booths to chat up potential clients, distribute information, and hand out little tchotchke giveaways (Josie got a wind-up dancing robot, Tommy a branded stress-relief globe ball; and yes, I had to look up how to spell tchotchke). It was surprising how many for-profit businesses were associated with the machine that is clinical research.
You sometimes wonder why things are done quickly one time, and take forever the next time. Or, in the case of my scans at Holy Cross, forever each subsequent time.
I originally wrote this post 48+ hours after the scans, and still had no results. But, they FINALLY came in: stable tumor regression. The overall percent of regression was slightly less than I had previously experienced, but the two largest tumors shrank by about the same amount as prior scans. So it was good news. It just would have been nice to get this good news in a timely manner.
We understand a little more why it takes so long; there are only certain radiologists that can read scans using RECIST rules, which are standards that clinical trials must use to measure tumors and their progression. So it’s not like it is just sitting under the Starbucks cup of some resident radiology doctor-in-training. These guys have a more labor-intensive challenge when they see “Sharpe” come across their desk.
When cancer and treatments are doing their best to kick your rear physically and mentally, where do you get the fortitude to soldier on? It is a question I have been asked many times, and the canned response is usually something along the lines of “You just do what needs to be done to be here, for your family.” Or, like I told my cousin Lisa, “Wouldn’t YOU do anything and everything possible to see your son grow up?” She would, I am, and many of you would too.
The roots of determination are planted at a young age, fostered through both education and example, and tested by trial as adolescence turns to adulthood. This starts with family, and although most of my lessons were taught by my Mom and Dad, there was always a secondary figure. Thomas Johnston Sharpe passed away last weekend, and carrying his name is only the tip of the iceberg that describes his influence.
You can probably insert a typical “The Greatest Generation” story here; my grandfather’s followed the same storylines many did. Go to the War, come home, get married, raise a family, work hard, and retire to enjoy the Golden Years. For Pop-Pop, that meant lying about his age to get into the Navy, then serving in the Pacific. He always downplayed his deployment as “just a cook”, and it was only recently we learned that he was involved in heavy fighting in the Battle of Okinawa. He came back and worked for the post office for 30 years, accumulating enough banked sick time to retire a couple of years early. I didn’t need to look very far for an example of dedication.
One sentiment I shared with family very early in my cancer diagnosis is when this is all said and done, I wanted to make a difference in the lives of others. This blog has given me a head start on that, but there is so many other ways to help people than just chronicling one patient’s ups and downs.
I got the chance to start down that path on Saturday, speaking at the Melanoma Research Foundation’s “Navigating Malignant Melanoma” conference in Miami. The MRF supports melanoma research, educates patients and physicians, and advocates for the melanoma community. Their website – www.melanoma.org – contains a wealth of knowledge on melanoma and resources for support and research. They are one of several organizations that are committed to battling melanoma alongside us patients. And they are doing another symposium in New York City on Saturday, February 8 – I highly suggest you make the trip up the Turnpike if you or a loved one has melanoma to learn about the breakthroughs being made in clinical trials and treatments.
The forum itself was small – they were piloting this approach for conferences in NYC and San Francisco – which turned out to be a good way to lead my first melanoma discussion. I don’t have much of a public speaking resume, mostly hour-long work presentations. Opening up about my illness was certainly going to be a change of pace, so I am a little glad the room wasn’t filled. Plus, the first of the two speaking parts was strictly with other patients and caregivers, which meant my story became more of a talk of treatments and clinical trial experiences. I could really relate to my audience (and they to me), and that connection is something I hope will seamlessly (yea right) transfer from blogging to speaking engagements.