Archive: June, 2013
“The waiting is the hardest part, every day you get one more yard.
You take it on faith, you take it to the heart, the waiting is the hardest part”
Tom Petty and my nephew Tyler both sing about the difficulties of delayed gratification; Petty in front of 20,000 fans, Tyler in front of his little sister and a bunch of Thomas the Tank Engine trains. The anticipation of what is to come is stressful; anyone who has ever taken the SAT’s or a driver’s test can tell you that sometimes, you just NEED to know NOW how you did. Add in “your life depends on these results”, and the delay from completion to notification makes time crawl.
In late February, we had that feeling waiting to get my scan results from Moffitt, after nearly six months had elapsed from initial diagnosis to completion of experimental treatment. When the tests results showed progression (oncology-speak for “it’s getting worse”), a bit of deflation and disappointment ensued. On Friday, I will have my first scans since we started PD-1, and the internal caterpillars are turning into butterflies in droves.
Dose #4 of PD-1 was last Thursday, and sometimes things don’t always go as planned. Sometimes, you take the good doses for granted as a sure sign of “getting better”. And sometimes, a taste of normal literally reminds you life is different when battling billions of your own cells that want to kill you.
The dose itself, like the three before it, went fine. I had even prepped ahead of time with a bit of immunity-boosting soup – garlic and onions and some veggies. Not exactly Campbell’s or Smitty’s Clam Bar chowder in culinary appeal, but, in theory, it gets the immune system fired up. Even if it’s only a theory, and, in reality, does jack to fight melanoma, there is a bit of an emotional lift that comes with actively doing something you feel contributes to the fight.
So perhaps it wasn’t the best idea to have a little “celebration” lunch of all-you-can-eat snow crabs immediately following the dose. While crabs are fine, and the drawn butter use was very limited, that whole “balance” thing wasn’t much of a consideration once a pile of steamed Alaskan crabs hit the middle of the table. Fast forward to midnight, and some serious stomach cramping that made sleep fitful, and I remembered taking a break from this battle sometimes comes with consequences.
When T.J. asked me to write a blog post about being a caregiver, I had no idea where to start. Should I take this opportunity to thank the countless people who have given so much love and support? Should I keep it positive, or talk about the fear constantly creeping inside my mind? Do I talk about relationships that grew stronger or ones that became strained? There are countless things cancer has changed, and only a few paragraphs to express it. So here it goes…
One thing that became crystal clear during this journey is that melanoma begins taking things away well before it takes away our loved one. It takes away hope. Not that I have lost hope, but there were times during this journey when I have felt hopeless. The doctor told us before the first trial it was T.J.’s best chance at long-term survival. The morning we heard the news “This trial isn’t working for you,” it was a huge blow and completely deflated us. It took a while to recover from that and regain hope.
Melanoma took away my maternity leave. Instead of mommy/son naps, leisurely afternoon strolls, play dates to show everyone our new baby, and catching up on really bad TV shows (like I did with Josie), my leave with Tommy was filled with handoffs to my Mom so I could go to the hospital or doctor appointments. I received text messages about his “first smile” and “first wave” instead of seeing them. And when I was with my baby, all I could do was be sad about what was happening to his Daddy.
Anyone who knows T.J. Sharpe knows he is anything but average. Even during the most difficult fight of his life, he thinks of others, and tries to answer life’s most difficult questions. However, his health concerns, and search for nutritional answers, are common ones. My name is Dr. Michael Edenzon, and along with Dr. Anthony Carabasi, I run the South Jersey Health and Wellness Center. When I heard T.J.’s story, I felt compelled to help.
The notion that medicine alone can fix all health problems is a thing of the past. When medication doesn’t have all the answers to your issues, what can you do? Where do you start when you want to get healthy naturally? Trying to decipher a proper natural care path is where most patients have trouble, and often give up. Hopefully, this is where I can help.
The best nutritional guidance comes from an objective analysis, not supplemental guesswork. The most effective way to evaluate a patient is through a complete blood panel analysis. Most, if not all, nutritional answers can be found in the blood. This includes which foods are best and which should be avoided, evaluating dehydrating, and determining if one of your major body systems is working sub-optimally or even failing.
Major League Baseball has, for the last 15 years, sponsored an initiative called Play Sun Smart. Alongside the American Academy of Dermatology, the program promotes skin cancer awareness, encourages baseball fans to get their skin examined for potential cancerous spots, and encourages sun safe behavior. The initiative launched this past Sunday, June 2nd, at several ballparks, and will continue throughout the summer. (The Phillies will participate in the Play Sun Smart program at some point, but no one in the organization seems to know when)
The goals of the program are pretty clear – MLB is pushing baseball fans everywhere to protect themselves and their children, and regularly perform self-exams in addition to annual dermatological check-ups. Baseball is an outdoor sport with a large number of participants and spectators exposed to the sun, especially at the grass-roots level where games often occur mid-day. Skin cancer reports and stories (and probably my blog) too often focus on high-risk individuals – sun tanners and tanning bed users – because they offer an easy visual to a story or sound bite. ANY prolonged sun exposure is potentially harmful, including to ballplayers and those watching them. This goes for football, basketball, volleyball, tennis, golf, and pretty much any other outdoor activity. Hockey players, you’re safe, at least in the rink.
Johnny Bench is the 2013 spokesperson for Play Sun Smart. Bench was recently treated for Basal Cell Carcinoma, the most common form of skin cancer. Previous spokesmen have included Dallas Braden, Troy Tulowitzki, Dustin Pedrioa, and Johan Santana, all whom have a loved one or close friend affected by skin cancer. They are a big part of getting people on board – a legend like Bench or some of the current All-Stars showing kids (and adults) that sun protection is an important part of their everyday lives.