Archive: April, 2013
Let’s get this out of the way now - if you get a little queasy from hearing bodily functions in detail, you might want to think twice about proceeding. If toilet humor makes you sick instead of making you laugh, this might be the time to read the Phillies’ High Cheese blog instead. If you have trouble changing diapers or cleaning the bathroom, well, thanks for checking us out, I will have something more palatable for you Thursday, enjoy your day.
However, if you have no qualms about something that isn't fun or easy to discuss over morning coffee and happy hour beers, then learning how to live with a colostomy is today’s topic for you. I know, not exact the… uh… ‘stuff’ you sit around chitchatting about every day (and FYI, this is going to read like a George Carlin skit - the seven words you can never blog about on Philly.com; I’ll let you fill in the double entendre here, but this should be a layup… colostomy, ‘stuff’, you get it, right??)
Anyways, before the editor sends this back with a big “We can’t publish this ‘stuff’ T.J.!!” (see?!?!), away we go. A colostomy is, in very basic terms, an opening where your colon gets rerouted out to another part of your body; in my case, my lower left abdominal wall. (For a little more detail on what an “ostomy” is – there are several kinds – and how I ended up with mine, click here). I couldn’t get a good number on how many people in the U.S. currently have colostomies, but it is estimated there are up to 100,000 ostomy surgeries every year. So you might not know someone who has or had one, but chances are someone in your phone’s contacts list does. Plus, now you know me.
So what exactly is an “ostomy”, and how did I get one? Many of you have probably heard of a colostomy, or a colostomy bag, but, much like me, had no idea what it meant or what happens to those who get one.
An "ostomy" is an opening created somewhere on the body to remove ‘stuff’ from your body, i.e. waste. In my case, we're talking about a colostomy, the most well-known ostomy, where the colon is detached and routed out of the body to a "stoma", where the ‘stuff’ exits. Your colon sort of circumnavigates around your entire abdominal cavity, starting near your right pelvic bone and going in a big, upside-down U shape up your right side (roughly along your oblique) , across the abdomen about halfway between your belly button and chest, and then back down the left oblique side before being routed out the back.
The colon functions as the final gathering place for waste that needs to be removed from your body. When something damages the colon – often colon cancer, but there are quite a few other reasons the procedure is performed – the damaged parts are surgically removed, the end towards the rectum stapled shut, and the healthy end routed out of the body to an opening called the stoma.
I wrote last week about being your own advocate with your doctors and health care, but what about advocating externally? Many of us hold strong beliefs, yet keep them internalized or among those who share the same opinions. Politics, religion, sports – you hear ad nauseam debate on these from every talk show host, amateur blogger (hey, that’s me!), drunken bar patron, and annoying relative at holiday dinners. Yet, when it comes to stuff that affects our daily health – like, say, skin care and melanoma awareness – the pockets of voices shouting are often drowned out by the silence of indifference.
I’ve spent the last 12 years leading by example – my closet filled with long sleeve shirts, a hat always tossed on top of the beach bag, suitcase, or Jeep stick shift. Sunscreen is everywhere. I have not been very evangelical about it, though – plenty of friends and family still sit in the sun for way too long with way too little protection. While I quite often give my disapproving looks (inherited from Mom) or make a comment or two – have I really done much to raise their awareness of the risks? (Well, other than get melanoma again – the sacrifices I make…) Most anyone knows getting sunburn is a bad idea, that you should wear sunscreen, etc… and yet so many still end up exposing themselves to the damage the sun can cause.
I was humbled and honored to be presented with the Melanoma International Foundations’s Patient Advocate of the Year award on Sunday. It reminded me that just typing my experiences about this battle isn’t enough. To truly reach people, advocacy requires depth of knowledge, the willingness to share that knowledge, and an ability to communicate so the intended audience, or at least part of it, comprehends the message and how it impacts their lives. Ideally, an advocate can help show a better way without coming across condescending (another inherited family trait that I haven’t seemed to fully shake). The last thing anyone wants to read is someone nagging about harmful UV rays, sun-protective clothes, and zinc oxide.
So now that we are underway with Plan B, it would probably be a good idea to give some more details on what exactly Plan B is and how it’s going to help me overcome this pesky melanoma nuisance. As the last blog post read, we started last Friday with the Merck PD-1 trial at Holy Cross Hospital here in Fort Lauderdale.
What is PD-1? PD-1 stands for Programmed Death-1 – nice, fellas, we couldn’t have picked something a little softer, just in case it was ever critical in treating cancer? Although commonly referred to as “PD-1”, the syntactically correct description of the infusion I am receiving is a “PD-1 antibody” or “anti-PD-1”. PD-1 is a protein found on the surface of T-cells (immune system cells) in our bodies; this protein binds with protein PD-L1 that is expressed in cancer cells, and together they protect the cancer cell from attack by our own immune system. Basically, we have an intruder in the midst and a turncoat in our army of immune cells that enables him to remain hidden.
Anti-PD-1 is an immunotherapy drug that targets breaking that PD-1/PD-L1 shield so the loyal soldiers can get in there and give these tumor cells a good old-fashioned beating – kind of like the whupping those responsible for the Boston Marathon tragedy yesterday are going to get. The antibody primarily prevents the binding of the PD-1 and PD-L1 proteins; I can’t fully articulate the biology behind it, but generally speaking, it keeps that connection from happening and thus enables the T cells to do their job and unleash hell on the cancer cells. Turncoat thwarted, enemy defeated.
For those of you who like to cut right to the chase, here is the short and sweet update. We are on to Plan B, starting Friday, and I have been randomized into the treatment group – that’s the one that gets the trial drug, in this case, Merck’s PD-1 antibody. The entire family exhaled; we will stay in Fort Lauderdale, be able to continue diet and nutrition adjustments, and get our preferred treatment.
This comes just in the nick of time, literally. I ended up in the hospital for two days with stomach pain and vomiting. The doctors couldn’t seem to find an obvious alternate clause, so the assumption is that the liver and spleen tumors are putting pressure on the intestine. I still think a combination of things helped put me there – overexertion, not staying hydrated, and some bean soup – but the CT scan I had showed the tumors are still growing and no other obvious signs of blockage.
The last few days had its share of emotions; finding out we got the PD-1 was the final hill of the roller coaster, but certainly not the only up and down moment. I thought the week would start with us finishing the trial enrollment process, instead of it ending that way. Rather, it began with potentially avoidable delays (including one I was responsible for by not getting the scans from Moffitt on Good Friday when I should have) and led to my cleaning out the garage with my buddy Jax.
So, when battling a deadly disease, you would hope there is some clear-cut, scientific, easily understood information regarding tangentially taking care of your heath, outside said disease. Sadly, you wouldn't just be wrong, you’d be WAY wrong.
You are about to hear just a fraction of why making choices for health outside the boundaries of clinical trials and FDA-approved treatments can make your head feel dizzy. And, why some of these controversial opinions and oft-cited facts have many believing that the “cure” for cancer and other diseases lies not within the labs and halls of medicine, but on the farm and in the grocery aisle.
I touched on the “cancer diet” in a previous post, but for posterity and those too busy to go read about vegetables, it breaks down like this – with the help of a nutritionist friend, I am on a pretty strict diet that features raw (and some cooked) veggies, limited fruit, some fish, lots of beans, a little egg, some nuts, and oh yea, more veggies. Gone from the pantry – animal meat, all dairy (giving up yogurt was tough), almost all processed foods, and sugar. Not just refined sugar, but really anything that spikes your blood sugar – hence the limited fruits. Her words to me were: “sugar feeds cancer.”
It has been a whirlwind week; Blue Cross FL has to be shaking their heads as they see authorization after authorization come in. First, a dermatologist visit last Wednesday, which I found almost comical. It had nothing to do with the doctor, though – the irony of getting checked for potentially cancerous skin legions two days before they are going to scan my entire upper body for anything cancerous was just too much for my smart-aleck sense of humor.
Upon taking off a mole (and found the biopsy negative), my response: “Hey, well at least I don’t have melanoma… right THERE!!”
Talking to the doctor about any new spots: “Well, the good thing is that the surgical scars seem to be pretty clear, so I have actually gotten LESS spots in the last half-year…”