Finding a clinical trial that is just right


Last night my triathlete friend Karen asked me what the deal was with clinical trials. Like, why do I have to shop for a clinical trial to help me find a cure for my cancer? She was correct in thinking that there is an established treatment for melanoma stage 3a. However, the advantage of participating in a clinical trial, as explained to me by my surgeon yesterday, is that medicine recently approved by the FDA for those with cancer stage 4 could potentially be tested on those of us with stage 3. The FDA approves a substance to battle cancer if it shows promise. The purpose of a clinical trial for those of us in stage 3 would help principals determine if a new treatment is more effective than the established treatment.

The website lists all of the trials going on — for everything, not just cancer. Type in a keyword (malady) and a location (Honolulu) and watch the results come up. For me there were a few but they were closed in Honolulu. We would consider a trial on the Mainland, but transportation and lodging costs would be tough to handle, especially if it were for a year or more. Plus, I have two teenage daughters. One will graduate in June. I want to be here. I want to see that.

Using the keywords melanoma, Honolulu, and surgery, I sifted through the pages and found three clinical trials that might fit and emailed the links to my oncologist. One was closed to adults, one focused on a vaccine and was in its first phase, and another one was not yet open, but was exactly what I needed. However, there was no indication it would be in Honolulu:

High-Dose Recombinant Interferon Alfa-2B or Pembrolizumab in Treating Patients With Stage III-IV High Risk Melanoma That Has Been Removed by Surgery

This is a double-blind study, so if I were to enroll, I would get either Interferon or Pembrolizumab. If I don’t participate, I would be administered Interferon, because it is in Kaiser Permanente’s formulary. What do I have to lose if I get the one I would be prescribed or Pembrolizumab, which is being tested?

The page indicated that the study would happen in September, but, since it isn’t yet recruiting, I sent an email to the principal. His nurses sent his responses back to me, including that the SWOG-sponsored study will start in a few weeks, including here in Hawaii. Kaiser Permanente participates in SWOG studies, and the nurses told me that the study will begin here about the same time as it would at various locations on the Mainland.

The fine print at the Clinical Trials website for this particular study indicates that my surgery would have to be within a 98-day window. I’m 30 days beyond my last surgery, so it looks like I will make the cut. Other things such as a full-body physical, blood tests, and the imaging that was conducted before the surgeries will also be part of my application. Fortunately for me, Kaiser has an oncology research area here and they are already helping me get ready for enrollment. Yesterday was the first time I had heard of CareEveryWhere, a secure network that facilitates the sharing of patient medical information, which is truly necessary as trials blend patients and facilities from different healthcare organizations.

Consider me optimistic. My glass is half full most days. I will not deny that the dark clouds of funk do find me and psyche me out sometimes. At yesterday’s final post op, my surgeon said she was pleased at how well I am healing. The first cut behind my knee surprised all of us by healing well enough to not need the skin graft. That was a big, deep hole! She said I have a good attitude, which is HUGE when it comes to battling cancer or fighting fat or training for a triathlon. HUGE.

You know what else is HUGE? That my friends and family have been so supportive. High school classmates who are survivors told me their inspiring stories. I have friends who share information about holistic healing and miracle foods (hello turmeric). One classmate, whose son is in residence in Cleveland, asked him to help me find a trial. He asked three other doctors. I was so pleased when the one they thought best was the one I had found myself. Nearly everyday I get a greeting card from someone. And my friend Michelle, who lives here in Hawaii and is one of my Boca Hawaii teammates, has been sending me colorful Hawaiian postcards signed by various coaches and other teammates! Crack me up! One had a recipe for a pina colada. Others are just beautiful shots of our Island home.

Finally, yesterday I was given the green light to begin walking on our treadmill for 30 minutes at a time. Once my wounds are fully healed I can start swimming again, going the distance at a leisurely pace before working on speed. I can’t get on a bike yet, at least for a few months, because the lymph node surgical site is right at the bend of the hip and the torso. You can still see my stitches. My body is not yet ready for it. My trainer is home and eventually, I’ll set it up and start riding in the backyard to prepare myself for getting back into my Boca Hawaii workouts.

I am able to cook. We are enjoying #EatAtMoms meals as often as possible. I won’t know how I’ll feel once the immunotherapy begins. Stay tuned. I may need to lean on you even more.


Boca Hawaii Triathlon Training Weekend 2015

Awaiting our flight from Honolulu to Kona.

Awaiting our flight from Honolulu to Kona.

What, besides three sports, do triathletes have in common? Actually, not much. What unites us is a desire to swim, bike and run. You know, the kind of stuff we did as kids. What separates us is the rest of our lives: family, friends, professions, physiques and political affiliations. I think we are also comfortable with being by ourselves, alone in a crowd. When you are training, even among fellow triathletes, there isn’t much time for talking. There’s a lot of introspection. Somehow, we manage to achieve a cohesion of overachievers and struggling wannabes united by commitment, heart and passion.

A boardroom of bikes.

A boardroom of bikes at the Hapuna Prince Hotel. 

In May I will participate in my third Ironman 70.3 triathlon on the Big Island’s Kohala Coast. This past weekend, about 60 Boca Hawaii athletes were joined by coaches and generous family members as support at the Hapuna Prince Hotel for a training weekend that would mimic and exceed the intensity of the event itself.

Resting at Hawi.

Resting at Hawi.

This was my second Boca Hawaii training weekend. I got there Thursday evening so I’d be fresh for the Friday morning bike ride to Hawi. Throughout the weekend we had scheduled bike rides, swims and runs. For me, this was the weekend where the bike route finally clicked for me. During last year’s race, I had an awful bike ride. But having done the ride twice during training weekend, I’ve figured out a way to budget my calories and effort to make each stroke count. No longer was I telling myself that the finish was just around the bend. I knew already. I credit this to riding my bike several times a week since January with super handsome coaches and equally attractive freshmen cyclists. Hey that sort of thing keeps me coming back! By the time endurance triathlon training came around, we were all bike ready.

My side of the room. Love the beds at the Hapuna Prince Hotel!

My side of the room. Love the beds at the Hapuna Prince Hotel!

My swim has gotten progressively better, despite the 30-60 second freakout at the start. I injured my wrist a few weeks ago. It didn’t help that it got slammed a few times this weekend while we were swimming in tight-knit clumps to get the feel of spinning arms and kicking legs, courtesy of our loving teammates. One thing I learned from masters swimming was to swim with as narrow a profile as possible. The motion keeps your arms close to your torso and head and can protect you from the novices’ deadly frog kicks. Whenever we swim in the ocean, I always feel someone touching the bottom of my feet as they draft in my bubbles. I often wonder about the person who ran their hand down my legs. Pausing to check would waste valuable seconds. So I just wonder.

My view from Tower Four includes Tower Three and a slice of beach.

My view from Tower Four includes Tower Three and a slice of beach.

Normal triathletes (well, typical triathletes) usually have one sport that is harder than the others. For me it’s the run. My cardio is strangely insufficient and both of my knees are bums. Add the stifling heat of baking lava fields, and I feel as though I am drowning, never quite able to breathe sufficiently. It hurts a lot.

Sunset at Hapuna Prince Hotel.

Sunset at Hapuna Prince Hotel.

How is it that some people can run so effortlessly? I envy them. I am trying to get to that point. I’ve lost some weight, so I expect it to get easier. I need to lose more. And what helps me lose more? More running. This weekend my runs scaled from OK to crap. When I got started on the last long run, my plan was to run out an hour and run back an hour to catch our plane. I started and three of my coaches passed me on the rolling hills with words of encouragement. Then Coach Felipe snuck up on me. I certainly didn’t expect him, but it was the most perfect time for the most perfect person to get to me. I was heaving, my heart rate was soaring, my legs were dragging, and I was melting. He assured me that I could never finish a 13.1 mile run breathing so laboriously. He made me slow down and catch my breath, he had me push out the CO2 to help my body get more oxygen, and he put my head in the right place. Then he moved on. I was motivated, as I always am, when a coach take the time to work with me when I am struggling most. I didn’t have a good run, but I did have a better perspective.

This TED Talk helps, too. Emily Balcetis, a social psychologist, talks about why some people find exercise harder than others. I watched it because I think I have a block about running. According to Balcetis, I should keep my eye on the prize and not be distracted by my surroundings. Is it that easy? Sometimes while running I come to realize that I was in a little zen zone for a while. And like a dream, it slips away as I desperately struggle to reinstate it. I am again reminded of how heavy my legs feel or how hot it is or how long the race is. Balcetis says that if one focuses on the goal, the finish actually seems closer.

My goal for the next month is to work on my run, build strength in my leg muscles, and preserve my knees. I hope that will result in a solid event and a personal record.

I have a theory about triathletes, based on my personal experience. We’re all a little crazy. We love to suffer together. We’re competitive, but we enjoy each other’s accomplishments. It’s a solo sport best prepared for en masse. Training our bodies is only part of the equation. If you can stand the person who you are while racing, then you’re that much closer to happiness.


You Just Climbed Koko Crater Not Koko Head (which is way easier)

Koko Crater tramway.

Koko Crater tramway.

About the title: When I checked in on Facebook, this was an option. And, as I’m always correcting people about how they climbed Koko Crater and not Koko Crater Head or Koko Head Crater or Koko Head, I jumped on that location immediately. It took me a while to get up there. Here’s my tale.

Under the blazing sun at 1 p.m. yesterday, I had the curiously strange idea to go up Koko Crater, which is practically in my backyard. It’s a big draw for (insane or fit or insanely fit) residents and tourists alike. It’s also a draw for those who want to go on a little hike. How hard can it be, they must ask themselves. I don’t know why anyone would do this hike more than once. We used to go up quite often, before it became a tourist destination, and we even took our daughters up there a few times. We’d watch the sunset, take in the view, and take lots of pictures.

For mere mortals, it’s not a piece of cake. The tramway is treacherous, there is nothing to hold onto except maybe the rail if you bend over and grab it, the trestle, which always seems to have a hive of bees or wasps in activity, is terrifying (so I took the cheater path on the side), and there is no water anywhere. If you aren’t discouraged by my message of doom yet, take a 2-liter bottle for the way up and maybe another for the way down.

Yes, my awesome Brooks Pure Cadence running shoes. Yes, this is typically the condition of the tramway all the way up.

Yes, my awesome Brooks Pure Cadence running shoes. Yes, this is typically the condition of the tramway the whole way.

There are 1,060 steps up to the top, and then you have to climb up rock that has been smoothed with erosion and thousands of footsteps. Years ago, an encouraging soul painted markers on the rail marking progress. At 200 steps. At 400 steps. At 500 steps At 800 steps. At 1,000 steps it also says only 60 more to go!


Everyone stops to rest, even the invincibles.

This being my off season, I haven’t been training for triathlons much recently. But how bad was it? Bad. Before I got to the 200th step I was having second thoughts. I knew I didn’t have to do it. I packed a little bit of water, but not nearly enough, and it was so hot. And it wasn’t until I got to the 400th step did I remember about the dreaded trestle. Although it seems to have been reinforced some, I do not have the constitution to go across, whether it’s climbing or descending. Fortunately, there is a well-worn path on its east side that takes some rock climbing and weaving in and out of the thorned haole koa thickets. To me, it was a better alternative.

A toddler is on dad's back, mom is right behind them, and their little big man raced ahead. It couldn't have been easy.

A toddler is on dad’s back, mom is right behind them, and their little big man raced ahead. It couldn’t have been easy.

I had to stop several times on the way up, and I wasn’t the only one. When people were coming down, it gave those of us on the way up a reason to step to the side and pause. I met several families on their way down, little kids fearlessly hopping about, dads and moms with babies on their backs (none too happy, either), a young couple in their 20s, of which the woman whimpered with every step down.

And then I met Julian and Evan. Carrying their bikes. On their way down. Julian was wearing a bicycle kit, was walking in his socks, and his bicycle shoes were stuck on his handlebars. Evan carried his big Giant bike on his shoulders. When I first caught a glimpse of them, I could see their bikes sparkling high above me at the top of the tramway, Julian’s front wheel spinning like a ferris wheel in the distance.

Julian and Evan walking down with their bikes after riding up to the peak on the tramway. This is who I mean by young invincibles.

Julian and Evan walking down with their bikes after riding up to the peak on the tramway. This is who I mean by young invincibles.

“Did youz guyz ride up from inside the crater?”

“Nope. We rode right up this trail.”

“Holy cow! Really? Are you in training?”

Julian told me he did the Honolulu Tinman, but he wasn’t doing this for training. If you could see that trail, you would be astonished at anyone getting a bike up there. If you have a rock hopper or a BMX or a trail bicycle, maybe, but these guys looked like they were on regular road bikes with regular tires.


The payoff.

Between 400 steps, the trestle, and 800 steps, I had to give myself the self pep talk. I compared the heat to Ka Wela, the recent Boca Hawaii endurance triathlon I completed a few months ago. I told myself if I can do Kona 70.3 Honu Ironman twice (and next year makes thrice), I can climb Koko Crater one more time in my life. I said to myself that I was not a quitter. I don’t quit. I might be slow, but I achieve my goal.

Finally, at the top, breathless, heart pounding, I leaned on the World War 2 pillbox to take a break, take out my phone and shoot stuff, like scenery.

A week or a weekend doesn’t go by that we don’t hear the sirens wailing and the fire department’s helicopter flying to Koko Crater to make a rescue. Having done it one final last time, it doesn’t surprise me. It would be so easy to fall and twist an ankle or break a bone. For me, it was dizzyingly high and at one point on the way down, I didn’t measure the step as far down as it was and I nearly tumbled. And, although it feels like it takes forever to get to the top, it also feels like forever to get back down. I am so done with it.

Somethings I don’t get:

  • Why do people hike with boom boxes or radios and make the rest of us listen to their music? Why not listen to the wind rushing through the brush, or the bullets ricocheting off the targets at the shooting range below?
  • Why do women wear cute little shoes for this climb?
  • Why do people go to the top and have a cigarette?
  • Why do people even go up there?

Great mysteries.



And From Death We Get Alone Time

It’s been a week since Aunt Mary Lou died. It was early in the morning, in her home, as though she fell asleep for the last time.

When I heard the news, I hustled to book a flight, a rental car and a hotel room. I was airborne Thursday afternoon and touched down in Philly by 1130 Friday morning. I visited my sister at her salon and then joined my mother and Uncle Ralph, a new widower, for dinner Friday evening. Saturday was the viewing, funeral mass, burial and celebration at Taylor’s Sports Restaurant and Bar on the Black Horse Pike.

Aunt Mary Lou has 10 grandchildren, all in their 20s and 30s. They took the long center table at Taylor’s. I know these kids. Three of them lost their mother, our eldest cousin Maureen, in a motorcycle accident. We are incomplete because Maureen is gone, but you have to make do. Her three children have become adults without her guidance. It cannot be easy. And no matter how hard a man tries, it’s pretty tough to be both parents. My heart is heavy for them.

At the viewing I got to see my cousins for the first time in a couple of years. They stood in a reception line as Aunt Mary Lou’s friends and family came through to pay their respects. I observed my cousins as they spoke with people who came to them, sharing their memories and sharing tears. Every time someone came through, the reception line would be brought to tears again. It had to be exhausting, I hope it was cathartic. In an open casket was Aunt Mary Lou. She wore a scarf and her hands clutched a rosary of red crystals. She was my Godmother.

Because I have been away for so long, I have grown apart from my family. This trip to New Jersey really showed me how much I have changed. The most significant change is my lack of a lead foot when behind the wheel. Thank goodness I’m in a rental car with Florida plates because I’m pretty certain I frustrate the heck out of every driver on these roads. I would be driving along on a back-country road (Yes, South Jersey is loaded with them) at 35mph and see a sign that says the speed limit is 50 (as indicated by the headlights behind me).

As a family member, I’m an outsider. I am not here enough to know all the goings on, who is doing what, what children and grandchildren are up to, who needs a prescription, who needs new eyeglasses, who is vegan, who is vegetarian, who’s staying married, who’s getting divorced, who’s struggling with what.

Every time I show up is a good time, even now. When I visit, and this has always been the case for the 36 years I have not lived in New Jersey, we all get together and have fun. Barbecues, parties, out to dinner, to the beach, all kinds of excursions.

Life goes on when someone we love dies. While we have to drop everything to take care of the details of death, we (and I mean my cousins mostly) must resume as soon as possible the matters of life. This time there weren’t any get togethers after Saturday and Sunday. I would imagine everyone has to go back to work, catch up with laundry, and live life.

So I am alone in my hotel room. I have paid my respects, I have offered my support, I have arrived to give Aunt Mary Lou my farewell in person. My cousins were so appreciative of my being here because I had come so far. Each of them is worth the trip. It was what I needed to do.

Tonight friends met with me at Ott’s Tavern in Delran. I spread myself too thin. I didn’t get to talk to any one person enough. It was enough and it wasn’t enough. When we are kids we have no idea how valuable time is. Now that we are older, we should. It is nearly priceless.

This is my contemplation. Time is swift. I will soon be checking out of my hotel room, driving myself to the airport, and getting myself from here to Hawaii, traveling solo through Philadelphia, Houston, LAX and HNL, where my husband will take me home where I belong.

They say they miss me. It is a wonderful thing to know.



My Second Tinman: It Gets Better


After I finish an event, I’m mostly all smiles. You can’t tell my feet hurt, can you?

Before I got hooked on triathlons, I used to think how crazy triathletes must be — but I always admired them. I wanted to swim, bike, and run, too! Embarrassment about my weight kept me from trying. I also thought I was too old and getting back into shape would be hopeless. But that nagging “Why NOT?” kept popping up. Since my first try in 2012 at the Boca Hawaii Lanikai Triathlon, I’ve done a handful of triathlons, including a half Ironman (70.3) last month. Triathlons remind me of small-kid time. Swim, bike, run, repeat. Now I’m starting to repeat events and there’s no telling when I’ll stop.

Yesterday I completed my second Hawaii Tinman Triathlon. Here it is: Finishing the 2013 Hawaii Tinman Triathlon. Impressive, huh? LOL! I came in about five minutes faster than last year. I also came in a little higher up the age-group food chain at 6th place out of 17. I’m so used to being in the bottom third, so that was a very pleasant surprise!

The weather was perfect, but a bit junk for a 25-mile bike ride through East Oahu. I managed a pretty good swim of the 750-meters in under 18 minutes. The first transition, T1, was like the longest barefoot run ever! Once on my bike, I could gain composure as that is my favorite event in a triathlon. Before I reached the top of Diamond Head Road, I saw somebody fixing a tire. There were a few more competitors along the bike route having to do the same. Blustery and rainy weather dislodges all kinds of crap from the road that can puncture a tire in an instant. And it is no fun to change a tire in the pouring rain. I’ve been extremely lucky in this instance. I got back to the staging area for T2 with a bike ride that was about five minutes faster than last year’s. I popped off my helmet, changed my sunglasses, put on socks and shoes, grabbed a gel and a swig of my Infinit Lavagal sport drink, and headed for the hills. My average running pace was 13-minute miles for the 10k. Yes, that’s slow for everyone else, but not bad for me. I had to do a little bit of walking, but I finished hard and fast. I hope that next year I’ll finish in under three hours. My 2012 time was 03:10:17. My 2013 time was 03:05:15.


Exiting the swim in front of a guy who took off in the wave before me. Booyah!

How did I get here?

Kristin “KC” Carlberg helped me find my comfort zone with her company, TryFitness, which is dedicated to helping women of all shapes and sizes achieve their personal fitness goals. If you think this might be you or someone you know, follow the link and begin an incredible journey. Orientations include women from all walks of life, in all shapes and sizes, aged 20-something to senior retirees. The one thing in common is that we all want a push, we all want accountability. Without it I wouldn’t ride my bicycle up Sierra Heights Drive or Pineapple Hill, I wouldn’t take on open-ocean swims, and I would never jog more than a trot. Squeeze my body into a spandex trisuit? Two years ago that would have been a whole lotta nope.

Now it’s yes. Yesterday I sent a message to Oahu’s premier sporting event organizer Chris Gardner and told him a weekend without hearing his voice on a bullhorn is boring. It’s true. I’m addicted to participating in all of these active events that help me realize personal goals. I’m rarely on the podium, but my personal victories are immeasurable. And I am so very fortunate that my husband gets up a few minutes before me each time to brew espresso shots and then join me as we drive at the pre-butt-crack-of-dawn to the starting line, camera in tow.

My abs are not ripped, I drink wine, and I can’t stand doing planks. I’m unemployed, STILL, and I believe training and participating in these events helps me feel a sense of accomplishment and gives me confidence as I inquire about jobs. In fact, yesterday as I was doing the Tinman run, I thought to myself how I really want to translate these personal achievements into plusses as I approach my personal intersection of joy: Happy family, satisfying job, physical fitness, and emotional balance. It gets better with each step I take. It gets better. I just need a personal conversion table.

Life is Like Riding a Bicycle

My last day at HMSA is Friday. I’m thrilled and terrified and excited and anxious all at the same time. What can I say? Bring it on, LIFE!

“Life is like riding a bicycle. To keep your balance, you must keep moving.” – Albert Einstein, a really smart guy.

Yesterday I rode my bicycle up Sierra Drive and it was the hardest thing I had ever done on a bicycle. Here are my stats. About 85 percent up the street I started seeing stars, so I had to unclip and get off before I blacked out. I inhaled my Albuterol, sucked down a double latte Power Gel, chased it with some water, and got my lungs back. Then I got back on my bike and rode it all the way to the top. It wasn’t pretty. It was awful. And as I approached the top, Coach Sonya had me zigzag up the street to help me handle the steep grade. I don’t know what that grade is, but I had reached 1,293 feet when I rode around Maunalani Circle and caught my breath. Coach KC was waiting for me up there and I was glad she helped me hustle up that final climb. If it weren’t for TryFitness Hawaii, I never would have even tried. It took me half an hour to get from bottom to top. I was somewhat faster going back down.

One of my favorite things to do on my bike is to fly down Makapu‘u and Heartbreak Hill (Kamiloiki), sometimes going as fast as 40mph. It’s exhilarating and takes less than a minute, as you can imagine. But coming down the winding Sierra Drive had to be done carefully and without that usual sense of free falling I tend to enjoy. It was as much a workout for my hands and forearms as I feathered my brakes all the way down to Waialae Avenue.

Glad I did it? Sure. Do it again? Hellas to the NO! The experience was designed to be more challenging than the bike portion of the Honu Ironman 70.3 triathlon. If I could do this, I could do that on June 1. The swim? Check. The ride? Check. The run? The run? Well, that still needs work. I’m fairly certain that if my swim and ride are on the swift side, I’ll finish the run within the allotted time.

After the ride I went home and washed the sheets and towels, made pizza dough, started labneh (yogurt cheese), watered the garden, and did that wife and mother thing. And contemplated my future. Life is interesting.

To keep my balance, I must keep moving.