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.


But I Feel Fine!


Except for the hole in the back of my knee and a leaky incision where my lymph node was extracted, I wouldn’t think anything was wrong with me. I feel great! How can I be sick? How can I have Cancer? How can it be stage 3a?

I went back to see my surgeon on Tuesday and as she was checking and redressing my melanoma golf-ball sized scoop, I asked if there were any results from the surgery a week before.

“We have a lot to talk about,” she said.

My heart sank. I kept my composure as she finished wrapping my leg. She left the room and I had a moment to look in the mirror and tell myself to keep it together. She returned with the paperwork.

She said it was very surprising that there was no melanoma in the surrounding skin behind my knee. I’m pleased about that, but man, that site is fugly! It hasn’t healed yet so we are waiting even longer to proceed with the skin graft.

Then she said that melanoma was present in the sentinel lymph node removed from my thigh, putting me from stage 1 to stage 3a just like that. Huh? Is this really happening to me? I feel fine!

She told me what was to happen next: PET, CT and MRI scans. These will determine if there is more cancer in my body and where. We will also take out more lymph nodes in another surgery that will require a hospital stay. That surgery puts me at risk of lymphedema.

I asked her: “Is this when people cry?”

She told me that there have been great strides made in melanoma research in the past five years, more than in the prior 50 years combined. She said: “THERE’S HOPE!”

I shall cling tenaciously. I have raced in three 70.3 Ironman events on Hawaii Island that were hotter than hell. I have swum in three Waikiki Roughwater Swims and walked back to the start to drive home. I have had my tendon burst and three miscarriages. I think I have the tenacity to get through this, too.

I will face many decisions to proceed or not. Through tearful discussions with my husband, we’ve pretty much determined that each decision will be toward prolonging my life.

I wasn’t expecting that at 56 I’d be having these conversations, and then breaking down at the prospect of not seeing my girls grow up. I don’t know if I’ll be able to observe them from a parallel universe or from a cloud in the sky, but I do know that right here would be best.

I always thought that as a life-long athlete who swam, went on hikes, surfed, rode a bike and managed a half-assed run, that I’ve been adding years to my life bank. I expected to be a Blue Zone girl, who in her 80s-90s could paddle a surfboard and pedal a bike, and maybe achieve some new PRs. Don’t I have another 40 years to be a feisty fun force?

Since melanoma is a sneaky bastard, my medical team is moving things along as quickly as we can. I’m getting the PET tomorrow, the CT on Tuesday.

About two years ago, when my unemployment ran out, no one would hire me, and I had to do cart rodeo at the local big box as a short-term hire (read: piece of meat), my sadness was so deep that I sometimes had wished I were dead. It wasn’t just those things, it was so much more. I’m a sensitive person, I take too much too personally and it isn’t a good way to be. I sought counseling. When I met my therapist, she said that I looked like someone who was beaten down, enveloped in my own sad cloud world. None of these feelings were because of my family. No matter how bad it got for me outside our door, they never let me down. I even felt guilty about how hard they had to work to pull me out of my personal pit. Antidepressants don’t make you glassy eyed and oblivious. They keep you on an even keel. You can still be hurt, you can get irritated at other drivers, you still worry about your bills, and you think people are stupid when they talk loudly or smoke. Antidepressants do not put wings on your back and make your heart unbreakable.

So I want to erase all those times when I wished I were dead. I’ve told the universe that I really didn’t mean it. Imagine if such thoughts were to come true for all of us? What a mess this world would be.

So many of you have reached out in love and offered me your time, your thoughts, your prayers and companionship. Thank you for being such a fine safety net. My husband and my girls will need that, too. They are so very strong for me, but I worry.

My new challenge. Am I pedaling fast enough? Am I pushing a hard enough gear? Triathlon training makes you dig deep and fortifies you to stick to it through the finish line. Maybe this is the race I’ve been training for all this time?

Suppressing My Expressions

Surprise. How many times did you come here wondering when I would update I tried a few times over the winter break, when I first started my Boca Hawaii bike training, when I first started teaching full-time as a permanent sub at Kaiser High School, when my LinkedIn account was finally extinguished, when I first started this year’s Boca Hawaii Honu 70.3 triathlon training program, if I ever got a moment to myself.

But I was in a lot of pain, deep inside. Every time I wanted to write something, my inner demons would tell me it was stupid and that no one cared. Who would read it? What would they say? And always someone to tell me I’m a whiner.

The intentions were there. I miss blogging. I like weighing in on what’s going on in the world and what it means to me, and what I think it might mean to you. But, I have instead begun an implosion, a deflating, a shrinking, a suppression of my expressions. The pie of my life is divided into smaller and smaller pieces. Sleep is one of the smallest. Triathlon training keeps me healthy, and I love to just work things out in my head while I’m swimming, pedaling my bike up a steep hill, or running for miles. I help my in-laws with their vegetable garden, I have my own yard to take care of, I feed the family, I pay bills, and I have those oh-shit moments when I look at the bathroom and realize it’s been a while since it’s been cleaned. Now that I’m teaching, I am thinking just about every waking moment about lesson plans, meetings, deadlines, building quizzes and tests, considering reading assignments, grammar and punctuation lessons, or choosing American Literature stories that won’t turn class time into nap time.

Adjustments have been made. Parts of life have been delayed. But new goals are set and, as I tend to be hopeful and optimistic as the sun rises each day, I desperately grasp the positives that people bestow upon me. They keep me sane, they keep me alive, they show me my relevance.

Hawaii Bike Training — Absolutely loved it. New teammates, different kinds of workouts, riding all over Oahu, loving coaches who pushed my ass further than I ever thought it would go. Grateful.

Teaching — Called by the principal on a Friday to start on Monday. American Literature for juniors, Expository Writing for seniors, English Language Arts for sophomores. I so enjoy it, despite the tons of work that’s involved. I would be lying if I didn’t admit to having students who are disruptive and insulting, but they are far outnumbered by those students who work with me. I teach core courses. It’s really a good idea to do all of the homework, all of the journal entries, and read the book. Teaching reminds me of my youth — that time when you think you know everything, don’t want to hear from the voices of experience, want to forge your own path and don’t see the benefit of someone who would love to help you avoid mistakes. Been there, done that. The older I get the more I realize the less I know. That’s the main lesson I’d love to tell these kids. One student asked me how it felt to hold graduation in the palm of my hand. I told him I didn’t. “You hold graduation in the palm of YOUR hand,” I said. He got it.

LinkedIn: The Brag Book of social media. True, it was extremely painful for me to face unemployment for so long and to wonder what the problem was when I applied for hundreds of jobs, got a handful of calls, three interviews and no offer. Hopelessness was a constant companion. It sucked. I didn’t want to see how wonderful everyone else’s life was. It took nearly six months to shut the front door on all that noise. I feel better already.

Boca Hawaii Endurance Triathlon Training — My home away from home. My extended family. Coaches who see in me what I don’t quite see myself. Third year of training for Honu 70.3. I feel like things are finally working. I’ve made a few personal changes. Wino’clock only occurs on Saturday evening. Beerthirty, once in a blue moon. Those two adjustments have made it possible for me to lose some weight, and it will continue. I pack a lunch for school, which is usually an apple, a Kind bar, some cheese; or humus and pita chips. Water, water, water.

Quiet moments. Cooking. Gardening. Connecting with my husband. Snuggling the kitty. Stealing hugs from my kids. Valuing every moment I have to myself and with you. Treasures.

Thoughts Become Reality

One of my dear friends from childhood named Sue, someone with whom I can spend a total of 15 minutes with every five years and still have a perpetual connection with (thanks to Facebook and perhaps thanks to our spirits), often gives her friends daily spiritual vitamins upon which to reflect. Today it was something from Marianne Williamson:

On Meeting Limits with Unlimited Thought
Our power lies in meeting limited circumstances with unlimited thought. It is not what happens to us, but what we choose to think about what happens to us, that determines what will happen next.
If our circumstances tempt us to think thoughts such as, “I’m such a loser,” “I will never have another chance,” “It will take forever for this situation to right itself,” or “I hate whoever is to blame for this,” then miracles, though they are programmed into the nature of the universe, cannot make their way into our awareness. They’re in the computer, but we’re not choosing to download them. With every thought we think, we either summon or block a miracle.
It is not our circumstances, then, but rather our thoughts about our circumstances, that determine our power to transform them. We choose in life whether to live in victimization or in victory. We have power either way – power to use against ourselves, or power to use to free ourselves. The point is that we always have the choice, and it’s not always as simple as it appears.
– Marianne Williamson

This hits on several areas in my life. First of all, I think it is a miracle that I have such a great husband and these two lovely daughters who care and love me so much. I do not love myself as much as they do. I should. I need to work on that constantly.

Secondly, while it is such a gift to be a freelance writer and to write articles in my shady and private backyard office, it gets a little tough when the checks take a long time to come in. It’s not that stable. That’s why I am a substitute teacher (believe me, having the summer off with my family has been GREAT! School starts Friday. Yay!). So I’m happy to be writing, it helps me stay relevant as a journalist, and it keeps me in touch with my community and people who are important. But honestly, I feel like I need a miracle every month to stay solvent, which is why I still send out my resume. There must be a few hundred versions of it out there right now.

Finally, being a triathlete is crazy. As a kid I loved to swim, bike and run around. I didn’t have my children until I was past 40, so I could do all kinds of things for a long time before they were born. But after they were born, I got sluggish and fat and that also makes your self esteem and soul turn to mush. At 50 I started to do triathlons. Do I train to win? Of course I do! Do I win? No. Not unless everyone else is out of town doing full-blown Ironmans or other endurance events. I try really hard to do my best. During my last half Ironman, which was Honu in Kona a few months ago, I struggled during my ride and my run. The self talk was all about “never again.” Thank goodness I had friends along the course who interrupted me with their cheers and support. I would have happily fallen into a lava tube to die. When I finished just minutes before the clock wound down, it felt like a miracle. And it was, woven by the voices of friends, the unbearable heat that I wanted to get away from, the desire to be done with it.

Reprogramming myself to understand that my thoughts control the gate through which miracles arrive is difficult, but it makes sense. If I want to attract something wonderful and fulfilling or even a conversation with someone I want to spend time with, I have to appear ready, I have to be available, and I have to be receptive.

Thinking positively. Peace.

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 Third Metric: Writing for You and Me.

Yesterday the automatic payment to renew my WordPress website was charged to my credit card. is a blog that has yet to make any money. It wasn’t really designed to make any money, but I figured that it would generate the feel-good currency of followers, hits, comments and pitches. I believe this blog has value. The value increases every time I draw in a reader who finishes an entry to the end, gives my words some thought and takes a step toward being healthy, making something delicious to eat, or thinks about getting married.

As a free-lance writer, it’s important that my words provide a return on investment. So I hope my blog also will lead to writing assignments. My experience as a former newspaper reporter, business writer, and corporate writer helps, too. I am grateful.

As a free-lance writer, my income is sparse and scattered. I’ve learned to live with less. I am married so I do have a safety net.

As a free-lance writer, there is no choice. I’m forced to adjust my economic sails to embrace this thing called the Third Metric, where people are encouraged to put personal preservation above material goods, money and power. The Third Metric is a big deal on the Huffington Post website, but I find it ironic that people with money and power are telling the rest of us that focusing on money and power will destroy us, or something like that. Well, I’ll take money to pay for Kid1&2’s college bills in a few years, to complete some projects around the house and to take a trip once a year. Please don’t tell me I should embrace life with less money when money pours into your accounts at rates beyond my comprehension. Don’t.

So that’s why I’m a lonely voice in the Aloha State who thinks hitching my blog to HuffPostHawaii for no return on investment is a no-win situation. Obviously, I didn’t make the list for the big party the other night, and I had to get off social media so I wouldn’t have to see all my friends’ updates and Instagrams about the emperor’s new clothes.

This blog is awesome. When the HuffPostHawaii idea was first floated, I got in touch with the editor and she liked But I’m not a college student, a beginner 20- or 30-something in communications, or a full-time public relations executive who can write her little blog on the side for free.

I have to respect my skill, my words, my work. I cannot give them away for free.

I understand that not all bloggers are journalists, traditionally. Not all bloggers went to journalism school like I did. Some bloggers stick to their interests such as anime, recipes, fashion, music and sports. Blogging is a way to journal about what’s going on. It may or not get hits.

But for me, blogging and writing professionally go hand-in-hand. I cannot help but reflect on current events, such as the time there was a shooting near Kalani High School on Kalanianaole Highway a few years ago.

I know that my blog entries connect with plenty of people in and out of Hawaii. This is real life. The flow of lavagal is decidedly different from the silly scratch-the-surface stuff you might find about Hawaii on some other big, shiny and pretty website. I hope you’ll agree.

Mahalo for reading.

Love, Me.

Comet’s Big Secret

Comet blended in well with the rocks in our yard.

Comet blended in well with the rocks in our yard.

This morning we made the very painful decision to euthanize Comet, whom many of you know as my furson and boy cat. Comet had developed a gallbladder blockage and jaundice. People can have their gallbladders removed. According to Dr. Sox at the Veterinary Emergency and Referral Center of Hawaii, cats don’t survive the surgical procedure very well. We tried antibiotics and prednisone (yes, I guess animals can be treated with steroids, too), but Comet didn’t improve. The gallbladder could burst at any given moment, so we made this decision based on what the outlook would be for Comet’s quality of life. Days and nights were spent under our bed, with trips to the water bowl and kitty litter box, and back. Minimal socialization. Kitty Girl hissed because Comet smelled “different.” 

Comet's first visit to the doctor.

Comet’s first visit to the doctor.

Three weeks ago when we took Comet in to see Dr. Sox we were informed that our Comet was a GIRL. Comet and her two sisters were born in our garage 10 years ago. I caught them in the have-a-heart trap one at a time, took them to the Humane Society and promised to take care of these feral kittens. In exchange they were spayed. Comet’s paperwork indicated she was a he and neutered. Go figure. Everyone makes a mistake with paperwork, right? It never occurred to me in all these years to part the fur and see for myself. And when cats are kittens it’s really hard to tell if there are fuzzy little balls or just a butt down there. 

Kitty Girl, the last of three Bender kitty siblings, aka, Chief of Security.

Kitty Girl, the last of three Bender kitty siblings, aka, Chief of Security.

It was quite a shock for us to receive this news. Not that we were disappointed, it’s just that Comet was such a boy in our eyes. Comet came with a frisky trot when called, could never pull off being aloof, and enjoyed sneaking up and pouncing on Kitty Girl whenever the opportunity presented itself. When tom cats would come into the garage and eat their food, Kitty Girl was the one who mixed it up with them. Maybe it was because she was in charge of security, but Comet rarely opened more than an eye when the toms came by. And I was pretty certain Comet was one of the guys, so to speak, as they’d hang out in the backyard together. Tom cats stink, so I always chased them away. 

So after Comet was outted as a she instead of a he, we adjusted our pronouns. We couldn’t care less. I just think we would have raised her differently had we known she was a chubby chick instead of a big guy. I always gave my boy cat extra brisk full body massages. Maybe I would have been gentler had I known Comet was a she. 

I’d lie if I didn’t say I cried all the way home. Losing Comet — this cat who stood on her hind legs to stroke her face along my hands, the cat who always gardened with me, hung out with me while I wrote on this computer (verklempt this very moment), and loved me unconditionally — has brought me to a very sad place today. 

Our world gives us gracious companions. When I rake the backyard the lizards watch as I stir up bugs for them to eat. When I walk into Kid2’s room, her betta fish swims excitedly just to get me to make duck lips at him. When I go out to harvest some of my vegetables from the garden, Kitty Girl inspects the pots and brushes up against the rosemary. When I swim, ride my bike, or run, I am always watching for the lovely creatures with which we share this planet. 

And I cannot help but be certain that their souls live on and that we shall meet again. Good-bye, sweet Comet. You were our gift.