Archive: August, 2013
Remember all that talk about how the bout with shingles wasn’t really all that bad? Yea, about that… apparently, shingles doesn’t just go quietly. It pillaged and burned as it went through my central nervous system, and while on the outside the visible damage is nearly gone, under the hood, the story is a little different.
It’s called postherpetic neuralgia, it is the result of nerve damage done by the shingles virus, and it wasn’t pretty. One minute I was sitting there, holding a good friend’s ten-day old baby boy. The next thing I know, a searing pain shoots form somewhere in the back of my skull towards my right eye – to the area the shingles resided just a few short weeks ago. A pounding headache followed, and I saw stars, curled up on the sofa. The entire right side of my face went numb. My eye felt like it was burning from the inside out.
I would say it felt like a cattle prod, or maybe a Tazer, but since I haven’t been prodded or tazed, the only analogy I could come up with was “(willingly) getting an electrical charge from a 12 volt battery on Spring Break in Metamoros”, although that one is kinda hazy, too. It was a cross between a shooting pain and a sharp continuous throb, an oxymoronic clashing of “This consistently hurts, and is somehow getting intermittently worse.” The best way to describe it would be the personification of two live wires touching – again, and again, and again – for a full minute. Every new touch, the pain increased a little bit.
"Let food be thy medicine and medicine be thy food" - Hippocrates
Let’s put the cards on the table now. My melanoma cells were initially caused by unprotected sun exposure, likely in my early to mid-20’s, that manifested in a small tumor near my right clavicle. Surgery was performed, tumor and lymph nodes were removed, and for twelve years I stayed safe outdoors, in hopes of avoiding a repeat occurrence of cancer. During that entire time of sunscreen and long sleeves, though, the cancer cells were already inside me, and at some point they began growing – and spreading.
So, if the sun caused the initial cancer, why look somewhere else for this melanoma recurrence –it has to be the sun’s fault again, right? Well, not necessarily. Many believe that cancer is a metabolic disease – that is, carcinogens cause cellular damage resulting in proliferation of cancer cells, versus the long-held notion that it is a genetic (i.e. inherited) disease.
“They say you’ll have nightmares if you don’t have some dreams; It’s another Grand Bar Scheme.” - Scott Kirby, “Grand Bar Schemes”
From what I understand, it started the way many great ideas do – a group of friends sitting around over drinks. Someone was struck with a moment of inspiration, and soon everyone was all-in developing it. Plans were made as the next round of cocktails arrived, and the later the evening got, the better the idea became. Creativity and energy flow as freely as the happy hour specials that inspire them.
Those dreams usually wither away as the crowd dwindles and the sun rises the next morning; the “grand bar scheme” from last night a slightly hazy memory. In Scott’s song, he describes a sailor’s Friday night plans to sail the world, only to wake up Saturday to the same mast-less, rudder-less boat he imagined taking on the seven seas with the previous evening. Many a great idea has taken the plunge back to reality the next day; luckily for us, a group of Jen’s close friends came up huge when it came time to set sail – they had a mast, rudder, full sails, and a couple of four-stroke engines to boot.
Well, the expedited scans that we got on our first go-around at Holy Cross was followed up with a delayed response the second time. You would think the radiologist would check with me before he makes vacation plans, but no… So not only did we wait all weekend, Monday came and went without results; they finally came in Tuesday afternoon.
So without further ado… after a huge 46% reduction in tumor burden between the baseline scan and Scan #1, the second scan was much less dramatic. Overall tumor size shrank from 14 cm to 12.8 cm, an 8% reduction from Scan 1 to Scan 2. Of the five target lesions, three shrank, one increased by 1 cm, and one had a very very small increase. The good news was the increases were in the two smallest tumors; the larger ones in the spleen and liver continue to shrink by double-digit percentage points.
There was a mixed reaction to the news. A bit of disappointment this wasn’t the dramatic drop from the first scan, combined with the encouraging view that it is considered “stable disease”, sort of leaves us with a “this is good but not great” feeling. Of course, this is just an initial reaction, and as the bigger picture is digested, this scan will feel more and more positive. The first scan results likely set everyone’s expectations unrealistically high; I am still taking a trial medication and have a fairly serious case of melanoma. If you told us back in March that the tumors would have shrunk in half by my second scans, we would have taken that in a heartbeat. Keeping the bigger picture in mind, no matter how much optimism is present, will help weather the ups and downs of recovery. It’s not always a linear progression, and the reality is that stabilization of malignancies is really considered a victory.
“It ain’t about how hard you hit, it’s about how hard you can get hit and keep moving forward; about how much you can take and keep moving forward. That’s how winning is done!” – Robert Balboa, Sr.
It is funny how life works sometimes. During my first hospital stay – just about a year ago, next week – I swore when this was all said and done, I wanted to make a difference in the lives of others. Call it a moment of clarity, or life smacking you in the face, or whatever. During my two weeks in Broward General, I faced the reality that my life had, up to that point, been fairly self-serving. Sure, there were plenty of moments I had sacrificed for the good or happiness of others, but the hard truth was that my contributions to this world, outside of family and social groups, was fairly insignificant.
This blog has given me a jump start on that goal. I got a text from someone who is going through the difficulties of a Stage IV melanoma battle, asking me how I do it; how do I deal with this dreaded disease in such a positive manner. It took me a while to reply – partially because I didn’t know exactly how to voice the feeling of rebounding from low points to pursue a lofty outcome that is a statistical outlier. I didn’t even have a good intro to this post; I had to rely on Rocky. It made me examine how I tick, why I see the good in every bad, and how I feel that is making the difference.
As we approach the one year mark of my diagnosis, the annual “bonus” I got was an all-expense paid stay in fabulous Holy Cross Hospital for shingles.
It reminds me of a “The Price is Right” prize package: “On this luxurious journey to the heart of tropical north Fort Lauderdale, you will be staying in your own private room at the beautiful isolation wing of Holy Cross. During your weeklong trip, enjoy complimentary meals and beverages, free Internet access, and your very own adjustable bed! But that’s not all. This package comes with a 24/7 nursing concierge service, who cater to your every medical whim. You also receive unannounced check-ups from the ophthalmologist, infectious disease, and oncology doctors, daily scalp massages of antibacterial ointments, and a shuttered right eye. All of this can be yours for the low price of participating in a potentially life-saving clinical trial!” Kind of glad I didn’t guess within $100 and find out what was in the other guy’s prize package.
At first it was like, “OK, this will be a quick easy pit stop for some IV medication.” Then you remember those little things that make a hospital stay so unique from your other summer vacations. The tugging of a small tube in your vein when you stretch out the IV arm a little too far. The fun of being woken up at 4:45 a.m. for a blood test - I mean really, who DOESN’T want to be poked by a small needle around the time farmers in Carlisle are hitting the snooze button? Meal selections which are repetitive, at best. A view that never changes. Constant “hospital sounds” that remind you’re never really alone. Stays that start stretching from “a couple” days to “a few” days to “several” days. Where do I sign up?