T.J. Sharpe
A common theme in the cancer world is that you are not in this alone. Many, many individuals are stakeholders in the battle. Some, like the medical professionals, have both a professional and personal interest in your treatment and recovery. Others, like the hospitals and pharmaceutical companies, have a more “client” relationship with you, but still hope for a positive outcome. Still others, especially volunteers, social workers, family, and friends, have a vested personal involvement. There are lots of interested parties, and all of them are pulling for yours to be a success story.
Former cancer patients and survivors often go above and beyond to offer their support to active cancer patients – well, everyone offers help – but those who walked this road before open up and relive their experiences in order to help prepare others for their battle. Many of those survivors reached out to share their personal cancer experience without prompting, or even introduction. People I don’t know – from as far away as Holland – have found me, shared their stories, gave encouragement, and offered “I am here if you need anything.”
It’s like being inducted into some sort of secret society – ‘Welcome Pledge Sharpe to the Kappa Rho Alpha Beta fraternity, here’s your pledge pin, start studying medical websites immediately and email us any questions.’
"One day they are gonna do a study that shows chicken causes cancer and pizza is good for you." -Slim, Spring 1999
"Chicken is poison." -Dr. Matt; ER at Broward General who made my initial cancer diagnosis, Summer 2012
Two quotes, taken 13+ years apart and in completely different contexts, and yet they seem eerily similar, no? The second was given to me by the admitting ER doctor at Broward General; he did a fellowship in age management and anti-aging medicine, and is a big believer in diet being the catalyst for our health. We have mutual friends, bring our kids to the same beach/pool club, and are roughly the same age. He and I have stayed in touch, and he is a big supporter and source of information as our family examined the effects of what we eat on our bodies.
The most difficult stretch of my treatment is officially in the rearview mirror. I was discharged Monday morning from Moffitt, almost a week to the hour after checking in. The recovery indicators shot up between Saturday morning and Sunday, so I just needed to remain off oxygen all Sunday and I was good to go Monday morning.
That the TIL + IL2 took only a week to go from infusion, through seven doses, and then get fully recovered is something that makes me proud. Originally, my goal had been to break records for the number of IL2 doses received; now, I am glad we halted them at seven before any markers got into the “red zone.” Sorry for any misconception at the end of the last post – both the doctors and I were thrilled to get seven doses in and remain fairly healthy. Stopping then was absolutely the right decision; there is no proof seven doses of IL2 is better than six or eight, when used as a TIL supplement. So, getting in a good number of doses, without triggering any cascading side effects and medicines, was very positive for my treatment and for my body in general – which has taken a beating the last few months and, frankly, could use a bit of good fortune.
Still, I’m not out of the woods yet, though. Chemo and IL2 both have delayed side effects that can kick in over the coming weeks. Plus, two doses of Yervoy still remain, and no one is sure what the cumulative toxic effects are of two Yervoy doses, followed by TIL, followed by IL2, followed by two more Yervoy doses. Oh yea – throw two surgeries in there too. This sounds like the lineup of shots from my 21st birthday, not a cancer treatment plan. So, the next couple of months will be rest, recovery, and lots of praying that these t-cells do their thing. A preliminary scan is scheduled for the end of February, but we won’t know for sure until early April how well this worked.
“Do or do not. There is no try.” - Yoda
Since I received my diagnosis in August, Interluken-2 (IL2) has been something that was tossed around in a serious voice by every oncologist we spoke with. The initial view was that it was a long shot we didn’t want to try – something like 10-15% of patients using IL2 as a treatment had a complete response, but up to 5% getting treated die. We have since learned IL2 is targeted towards younger individuals without other medical issues, as their death rate is nearly non-existent. It also ended up being the final component in my Yervoy and TIL + IL2 treatment. It was something I would just have to do.
First-hand accounts of the IL2 treatment from several people who underwent it made it sound fairly awful. “I wouldn’t wish it on my worst enemy” said one, who happens to be an Army Major and has battled actual enemies on actual battlefields. Another cancer colleague relayed an IL2 experience where he began behaving oddly and quoting Star Wars (“Strong in the Force are these IL2 doses, mmm”) until his wife called in nurses, prompting him to label her a NARC.
Point is, we heard some pretty nasty stories about IL2 treatments– and that word continually came up, “nasty.” The most prevalent side effect is termed rigors (pronounced RYE-gors, but spelled way too close to describing a deceased body for my taste). Take a cold winter day and go outside in jeans and a t-shirt – that sudden, uncontrollable shaking you’ll eventually feel is pretty much the same as rigors. Luckily, two things combat this – warmed blankets and a drug called Dilaudid, which reduces the shakes in one or two doses.
Today is the big day. Navy SEAL-like t-cells are “storming the beach” sometime in the afternoon. We don't have the exact time; apparently, I am on a need to know basis, and, well, I don’t need to know yet. Chemotherapy has knocked out my immune system, and I am physically ready to tackle the part of the trial that determines my treatment outcome and, basically, the remainder of my life. As Eddie Vedder said at the start of the Spectrum’s last concert, “This is it.”
The week of chemo was relatively event-free. Fatigue and a bit of appetite loss were the only real side effects. I completed inpatient chemo with only bloating as the worst effect– bathroom use was frequent, as 10 pounds of saline solution and Meznax IV water weight has to go somewhere.
For the rest of the week, daily trips to the infusion center at Moffitt supplied me with Fludarabine, a leukemia chemotherapy that will finish off the existing white blood cells. From there, it is TIL infusion Monday, and IL2 beginning Tuesday at 6am. By the weekend, I should be recovering while watching the Flyers and Pens drop the puck – thanks NHL for giving me hockey back and putting the Flyers on national TV Saturday and Sunday! Until then, I will be in and out of coherency, but am hoping to have updates during the IL2 and immediately afterwards.
As of Monday afternoon, I had a 0.16 k/uLWBC count, meaning I have near-zero white blood cells left. Keep your sick kids away from me for the next few days.
Yea cancer pretty much sucks, but there are small benefits here and there if you know how to find them:
10. Facial hair freedom – First it was the playoff beard, now we’re rocking the Fu Man Chu (poorly I may add), who knows what is next.
9. Mid-day naps – I average two. Per day. And they are fantastic. Somehow, this will continue after all is said and done. Siestas are way better than trying to plow through the afternoon on 5 Hour Energy. Josie and Tommy are the perfect cuddle buddies for one of the aforementioned naps, as long as they don’t kick too much.
8. Baby weight loss – Granted, this wasn’t the ideal way to drop the sympathy pounds I put on while Jen was pregnant, but I do not have to worry about counting calories anytime soon.
7. Fashion – Elmo pajama pants, CMU Football t-shirts, gym shorts, and anything else comfortable makes the cut, funny looks from others be damned.
When you think of chemotherapy, images of suffering patients, clad in hospital gowns and bandanas, pop into mind. Hours into my first chemo dose, I'm still waiting for our night to tailspin into the medical nightmares you read about.
Instead, it has been surprisingly good hospital food, surprisingly bad college football, and lots of sitting around in t-shirts and sweats talking to nurses and each other. The toughest thing so far was choosing what color Gatorade to have (green over orange, no brainer). I know the next two weeks will give plenty of challenges, so I am grateful this start has gone rather smoothly.
In serious situations, I lean on humor to lighten the mood. My nurse said I was the funniest chemo patient she has ever had, although I'm pretty sure she was pacifying me in hopes I would quiet down. When she set up the IV for the Cytoxin, she wore two sets of rubber gloves and a full smock-type thing, which led to this exchange:
Me: "You're wearing a full-body garment and double-bagging the gloves so this doesn't irritate your skin on the off chance it spills, yet you're going to put this through a tube and dump it into my body inches from my heart?"
167 days. That’s how long it will be fromfirst checking into the hospitalwith flu-like symptoms and when I start the most intense, and important, treatment for Stage 4 Melanoma. For you moms out there, I am almost in the third trimester – many surely remember the feelings of anxiety mixed with excitement as “the date” got closer. So, yes, getting the green light this past week was an exhale moment. It is go time.
This year has already been about go-go-go, less than a week in. I experienced the life of a sports reporter for a few hours at the Outback Bowl in Tampa on January 1st. Knights Sports Productions, a radio and television sports production company based in Tampa, brought me to Raymond James Stadium to shoot a segment prior to the game. Our team watched the game in the press box and, for the final five minutes, from the field. If you saw the game highlights (a last-second South Carolina win over Michigan), you saw us standing under the goalpost as the Gamecocks scored the winning touchdown. Pretty cool! And anote to the Eagles front office- you want to finish 0-16 next year and draft Jadeveon Clowney. Trust me on this one.
Alas, all good things come to an end, so the following day I got a port placed in me. It is a “permanent” IV; inserted for the next month so they don’t need to keep sticking me with needles. Presented as a small procedure, it wiped me out for nearly a full day, and certainly was not pain-free.I don’t know what I was expecting, but placing a tube into your chest vein the size of a Big Gulp straw is not the same as a routine blood draw.
Part of what every patient should understand is that medicine is an inexact science at best. Little things can slip through cracks – my recent episode with thrush in my throat at the end of our Disney trip is the perfect example. It turned out to be easily treatable with oral antifungal mouthwash, but it really gave us a scare. The reason I got it? I didn’t eat probiotic yogurt for a few days. Doctor’s orders were “eat Activa yogurt,” but the nuance of “be sure you have X amount of yogurt or probiotics pills every day, since you will be prone to fungal infections because you are taking antibiotics” was never clear. It is hard to lay fault on anyone; the point is, for even the smallest of things, taking ownership of your health and care is critical.
res·o·lu·tion [rez-uh-loo-shuhn] noun
- The state or quality of being resolute; firm determination.
- A resolving to do something.
- A course of action determined or decided on.
- A formal statement of a decision or expression of opinion put before or adopted by an assembly such as the U.S. Congress.
- Physics & Chemistry The act or process of separating or reducing something into its constituent parts
- The fineness of detail that can be distinguished in an image, as on a video display terminal.
- Medicine The subsiding or termination of an abnormal condition, such as a fever or an inflammation.
The New Year is one of the arbitrarily-selected times we use to make self-improvements and “resolve” to do better, live better, be better people. Ask a personal trainer, dietician, or parent of a teenager how most resolutions fare by St. Patrick’s Day, and you understand the difference between “resolving to do something” and “getting the job done.” (That also applies to all kinds of political commentary, but since we are in the Health section, I will stick to medical cancers.)
Much like the sun, resolutions rise with energy and promise and the glow of potential; a new day, a new opportunity, another chance to make the world – your world – better. And, much like the daytime, our resolutions face a gamut of unpredictable conditions. Weather affects how our sun’s rays reach the earth; some days are blistering hot, others leave us cold, still others change potential into a dark, damp, dreary reminder that sunshine isn’t a promise. Then there are days that you wish you could bottle–80 degrees and sunny with a breeze on the water, a quiet snow falling outside a fireplace overlooking the ski slopes, or crisp autumn air that is just cool enough to remind you of all the outdoor possibilities that await. Those are the days you know are conducive to making resolutions a reality.
Our life resolutions follow the same arc as the sun. My 2012 resolutions were simple and not exactly original – get in shape, have more family time and less “T.J. time,” get involved in charity, and generally be the father and husband my kids would be proud of, much like my Dad is to me, and my Grandfather to him. In a lot of ways I succeeded – in the last 15 months (I started mine a little early) I was able to:
- drop close to “playing weight” and check off a Tough Mudder and Spartan Race (“finish” counts as check off – we’ll work on the glacial speed of the runs in 2013);
- help run and serve on the Board of Directors for A Prom to Remember, a fantastic charity providing the ultimate prom experience for teens affected by cancer;
- restructure our family time to spend nights and weekends taking advantage of a two year old’s curiosity and ever-growing ability to interact with Mommy and Daddy; and
- change eating and drinking habits to cut out much of the sugar, meat, and dairy while adding whole and plant-based foods. With Jen being pregnant for the first half of my resolution period, and starting to feel my age on Sunday mornings, I also decided the “drink and be merry” lifestyle needed some adjustments too, so our social drinking was limited to the occasional dinner or party. For those of you who live in (or have been to) South Florida, you know there is never a shortage of opportunities to have a good time.
By T.J. Sharpe
My Dad asked me the other day, in a somewhat contentious debate about the merits of a day trip to Disney World being the best idea, “You’re not giving up or anything, are you?” His question, and concern, was understandable – after recovering and taking it easy for the last several weeks, a slightly impulsive decision to join my family for a day at amusement parks can easily be seen as “getting it in now.”
That’s not why the Sharpe family was at The Most Magical Place on Earth, though. Our cousin had a dancing audition there, and Jen wanted to combine seeing extended family with a trip to the park. I felt up to tagging along for the ride to Disney and planned to join them in the evening at the Magic Kingdom. In the meantime, I would take care of some busy work in the room – paying bills, submitting insurance stuff, and generally getting us somewhat caught up with life.
Then I looked in the mirror. Forget cancer, or even major surgery recovery. My kids were going to Disney, the youngest one for the first time. I am still recovering, but it wasn’t like I was or am incapacitated. Was I really going to sit and fill out forms and use my current medical state to justify a few hours of busy work? Was I really being given the chance to create a special memory and passing it up for AFLAC and Wells Fargo paperwork?
- Abington Memorial Hospital
- Agency for Healthcare Research and Quality
- American Medical Association
- Aria Health
- Centers for Disease Control and Prevention
- Centers for Medicare & Medicaid Services
- Consumer Medication Safety site from ISMP
- Cooper University Hospital
- Crozer-Keystone Health System
- ECRI Institute
- Inquirer Health & Science
- Institute for Safe Medication Practices
- Jefferson Health System
- Kaiser Health News
- Kennedy Health System
- Lourdes Health System
- Medical Society of New Jersey
- Mercy Health System
- New Jersey Department of Health and Senior Services
- New Jersey Hospital Association
- NPR.org Shots
- NYTimes.com: Well
- Penn Medicine
- Pennsylvania Department of Health
- Pennsylvania Health Care Cost Containment Council
- Pennsylvania Medical Society
- Pennsylvania Patient Safety Authority
- St. Mary Medical Center
- Temple University Health System
- Tenet Healthcare
- The ACP Advocate Blog by Bob Doherty
- The Chester County Hospital
- The Hospital & Healthsystem Association of Pennsylvania
- U.S. Department of Health and Human Services
- U.S. Food and Drug Administration
- Virtua
- WSJ.com Health
