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Halfway through my treatment


I’m alive and I have a great and supportive family, for that I am grateful. Unfortunately, the Interferon for my melanoma plays games with my head and emotions, so when left to my own devices life can be a big black hole. Feelings, emotions, outlook, and attitude have all been tested. The physical side effects often include aching legs and shoulders. I lost 20 pounds since January. And I have definitely lost a lot of hair.

Six months to go and I’m no quitter. Halfway done, pushing through until December. I can do this. But can my family endure? No one sees you at your worst than family. And yet, their patience is keeping me from saying screw it. I want to complete the regimen. They’re along for the ride.

I think it’s a good thing that I can be pragmatic about what I am going through. It’s just that sometimes I am mean as a bear. I feel like I’m watching myself tear down all that is good. I wonder how my family can stand it. Maybe there’s enough good in me that they are willing to endure.

I cannot stand being around people who are negative and their cup is half empty. And here I am one of these people. So the cycle continues. No, not really. At least I can tell myself to snap out of it.

We have a treadmill that I don’t get on often enough, but I do get on it and I do a brisk walk when I do. I plug in my Amazon or Google Play music, queue up the indie hits, and enjoy the lyrics and not thinking about myself for once. The first time I got on the treadmill, I stayed on for an hour. What a mistake that was. Now I do 30 minutes and then wind down.

I am shooting for January to resume bike training with Boca Hawaii. I finish up this mess in mid December. I am expecting my strength will slowly come back. Not sure I’m looking forward to the Tantalus, Maunawili Heights, or even my friendly neighborhood Kamiloiki “Heartbreak Hill” bike rides just yet. I’m fully expecting to be Lantern Rouge as I was when I first joined Boca. Starting from scratch.

I had four years of triathlon training logged in when I found out I had melanoma. How long did I have cancer while I was training, racing, swimming, riding, and running? I felt fine. Then a test comes back and says I had cancer for who knows how long. How could I have been training so hard and not suspect? That’s the thing. How do you know YOU don’t have cancer?

You’d think I’d use this down time to write or clean or organize, but I don’t. I am, however, learning to sew with an infinitely patient teacher, Bonnie. Sewing gets me out of my funk. It requires a lot of thinking, and it pushes the negatives out of my head. Even when I am ripping out seams, I feel a certain contentment while working with the fabric and sewing the stitches.

I make the bed every morning because it gives me a small sense of accomplishment. And I tell everyone to wear sunscreen. That goes for you, too.

 

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The slowest and the fastest year


I’ve always played with my hair, twirling the curls between my fingers until they were smooth, absentmindedly while driving, reading, or here, sitting on the sofa. Only now many strands come off in my hand and I build a pile beside me until I get up. I bury them in the trash so no one has to see. My hair is noticeably thinner and I’m a bit self conscious about it. I wear a hat when I am out, but really it’s important for everyone who needs sun protection. My family looks at me like I’m crazy when I remark about my thinning curls. It’s no big deal. This too shall pass. Thanks, Interferon. Thanks melanoma.

It is now May. I’ve been on Interferon since December. I’ll be on Interferon into December. Last night I gave myself a shot in my stomach, into the jelly roll of subcutaneous fat as directed. Usually I’m fine the next day, but lately my legs have started hurting by the very next morning, instead of just getting the bad feels 24 hours later. I took a Tylenol and decided that getting on the treadmill might be a good idea. It was. A far cry from my hours-long workouts with Boca Hawaii, I do a brisk walk for 15 minutes. I have to take care of myself. I have to give my body a chance to heal without hurting it too much. A 15-minute walk everyday can’t be too much.

Although I have kept substitute teaching through this convalescence, I have had time to do things that I think are good for my family. I’m brewing two continuous batches of kombucha at any given time. I’m learning to make a fizzy second ferment with fruit. It’s weird to see the SCOBYs on top of my dispensers. They are huge and thick and they look kind of gross. But if probiotics are helpful, then I can overlook my SCOBY mothers and babies and appreciate them for all that they do.

I’ve also started baking bread. In fact, I should be doing that right now. I’ve been using a quick recipe that involves flour, salt, water and yeast, a two-hour rise, a series of pats, and 30 minutes later into the 450-degree oven in my preheated Dutch oven to bake for 35 minutes lid on, 20 minutes lid off, ala Mark Bittman. Out comes a round and golden loaf, crispy on the outside, irresistible to my family. But I’ve been watching Michael Pollan’s COOKED series on Netflix and I’m rethinking yeast and I’m wrapping my head around creating my own sourdough starter.

Finally, what is making this year race by is that my eldest daughter is preparing for college, leaving late this summer for Reed in Portland, Oregon. One friend told me that Reed is basically prep school for grad school and yields the most PhD’s per capita of any school except for Caltech. High standards.

Sophie is very alpha. She calls her shots. She rarely asks for advice. We are proud of her. In some ways I feel like she’s already left me. There are things I long to tell her, but I can tell that she wants to discover the good and the bad on her own. It’s only natural. We’ve all been there. When do we realize that the people around us can provide valuable information and ideas to help us get by in life? Certainly not when we are teenagers.

Remember when she went on her fourth-grade Big Island trip? A rite of passage for the children who left home for the first time in their short little lives? That’s the feeling I’m anticipating — another rite of passage for me, one I’m not eager to experience. One of my brothers-in-law, whose two children have safely gotten through college and are now making their way in the world, gave us some words of wisdom: “It’s only four years.”

And time will fly.

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A Life on Hold


I am trying very hard to be OK with 2016 being the year of very little to happen to me. It isn’t easy to spend 56 years as an active person and then (boom) Cancer. I’m stuck in the house, limited in my activities, and shelving the triathlon training. Fortunately, I’ve got the strength to substitute teach, but even then I sometimes turn down jobs because I don’t have the energy nor the moxy to hang with high schoolers.

I sit on the sofa here and run my hands through my hair, pulling out hundreds of strands and building a pile of it beside me, a ball of air and hair and fluff of fallout that reminds me of why I can’t do fun things. Every day I start a new pile and I wonder if I’m going to be a shiny bald woman or someone with a head of sparse dust bunnies trying to be OK with it. I wear a hat to cook or bake bread because too often I see hair dropping toward the cutting board or poised on my arms ready to drop in a salad.

I’ve been on Facebook since 2009 and I enjoy keeping in touch with childhood friends, triathlon teammates, family, and my Hawaii community. But I realize I need to retreat. Having posted my share of great accomplishments and pictures of food and my bike, Hawaiian sunsets and kitty cats, I’ve created an aura that is pure bullshit. All is not well as you might believe. I’m covering up my pain, my loneliness, my desire to be every one of you who are amazing and wonderful and rich and fortunate and healthy and active and cancer free.

And I do believe that what I see on Facebook from all of my friends is mostly bullshit, too. How many photos before that perfect one was posted? How many miles on your bike, or your run, or how many turtles or sharks on your swim, or how many laps in the pool? What is the message? What do you want people to think? How much room is there on a pedestal? How much envy do you wish to incite? Believe me, I envy you all to the point of feeling like the insignificant shit I’ve become.

I once took a photo of my needle but it wasn’t really all that good of a shot (rim shot, oh never mind). I continue to prepare my meds every Monday, Wednesday, and Friday, mixing the saline with the interferon until it’s ready, filling my syringe, and injecting it into my stomach at a 45 degree angle. Every time I do it, I notice that the toes on my right foot flex and relax, flex and relax, flex and relax because it’s hard to pretend that it’s no big deal. I slowly take out the needle because removing it can be painful if I’m not careful. And that’s that. Believe it or not, 24 hours later I get what I call “the bad feels.” Some Tuesdays and Thursdays are pretty shitty. But most of the time, I don’t have a problem until about 24 hours later. So I take some Tylenol, and prochlorperazine, which is actually supposed to help with depression and schizophrenia.  All because I’m committed to a year of MWF evenings to self-inject into my stomach a needle full of something that isn’t even guaranteed to extend my life.

Hope keeps us alive, as do family and friends. I’m not suicidal, but, I sometimes feel so worthless that I feel like my family would be better off without this burden I’ve become.

Real life doesn’t stop. I still shop at Costco, I make dinner, I’m now into making a daily loaf of bread, a weekly batch of yogurt, and I tap out fresh kombucha every three days. I’m learning to use a sewing machine. My garden calls, but it’s a bit of a reminder of how crappy I feel as it is full of weeds.

Before my melanoma stage 3a diagnosis, there were things in my life that were not right, and this intermission during year 57 makes me assess how things were and how they could be better and also why I should be focused on writing since I have the time. Not just blogging, but writing that may or may not be shared while I still walk the earth.

You know that “Why me?” whine that happens to people like me? I think I’ve said it before: “Why not me?” I can’t think of another person with whom I would feel good about trading places. Even my former crap stupid employer. This is my road for now and although it’s a fucking pain in the ass, it’s mine and I need to figure this shit out so everyone I love loves me back, and because a good attitude means the glass is half full even if life for now feels half empty.

So temporarily retreating from Facebook should help with that half empty part. Thank you for your support.

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The Leap Year Eddie Aikau


While it must have surely been nice to have been on the beach at Waimea Bay on Thursday, February 25, 2016, to watch The Quiksilver in Memory of Eddie Aikau surfing contest, watching it on my computer, listening to the commentators, taking in the color, and watching my friends’ Julie Wassel and Mike Gordon’s Facebook feeds more than made up for it. In fact, I promise you my heart raced, there was a lump in my throat, it was impossible to avoid the Aloha Spirit as it radiated from my screen.

Congratulations to John John Florence, a Young Gun from Haleiwa on his amazing win. Changing of the guard and all that. What a phenomenal surfer — as they all were.

Why was this such a spectacular event, colossal waves aside?

Did you get to watch? Here is the Quiksilver video that I cannot stop stacking up my views. Spectacular. Watch it if you’ve only seen it 0-10 times:

https://youtu.be/RNk7XRWp4GE

It has been too long since I’ve been on my dusty 9’6″ surfboard, but I am psyched to get out there again once I’ve finished this year of chemotherapy (melanoma stage 3a, thanks to surfing, swimming, and sunburns ever since I was a little on the Jersey Shore). When I first came to Hawaii in 1981, I started surfing within months of arriving. I learned from really great surfer friends: Ben Aipa, Bobby Kekoanui, Curtis Miyashiro, Rell Sunn, Yolanda Elliot, Tony Moniz. I first paddled out in Waikiki, but soon moved on to the Cliffs at Diamond Head, Number Threes, Ala Moana Bowls, Tennis Courts, Nanakuli, Makaha, Chun’s Reef, Laniakea, Haleiwa, Pipeline (SMALL), Val’s Reef (left some skin there), Rocky Point, and Velzyland. Did I just drop a lot of names? So what, haha. I got to surf with famous surfers before they were famous — like Sunny Garcia and Shawn Thompson (well, he was famous back then). Do they remember me? Hell no. Just one of a handful of chicks in the lineup during the 80s.

So for me, it was a wonderful thing to see a different kind of surfing event. In the contests I had been in, I and others would witness bad sportsmanship and punches thrown if someone dared to take off in front of someone else. Fins got broken off, boards snapped in half, rage upon rage among hot-tempered braddahs. At one contest another woman purposely tried to drop in on me but she fell off her board and I went on to score a great wave, and placing high enough to get a trophy. She later apologized. Sheesh. Head games.

What was happening during the Eddie? There were some spectacular collisions out there, late drops, wipe outs, and crossed boards. What happened when the sea spray cleared and they paddled back to the lineup? To me it looked like it stayed pretty mellow. How come?

When you watch this clip, very early on you see an Aunty, maybe even an Aunty Aikau  — confirmed, Aunty Myra Aikau (Mahalo, Jules!), talking to the athletes about what it means to them, what it means to Eddie, and what was expected.

“…Eddie would want you to help each other…” she said. That dropped right into my heart. What a wonderful way to paddle out to surf, no matter where your favorite break is. Emulating what Eddie would do while out at your big break or your little ankle-snapper secret spot, that sensibility would make every surfing safari a joy.

It was confirmed from the Quiksilver Facebook page: “When Koa Rothman said — “I just wanted to get a photo of me with my brother Makua (Rothman) an Kala (Alexander) behind me,” you get the sense that the guys out there were having a blast, enjoying each other, and catching the most massive waves ever seen at Waimea Bay.

The live interviews by Kaipo Guerrero (I surfed with his dad and I remember when he would paddle out at like nine years old) on the beach brought us right to the heart of what Kelly Slater was feeling when he got tucked into a tube sent directly from the late Brock Little, a middle-aged surfer guy who succumbed to cancer a few weeks before (He’s younger than me, so relax).

My friend Julie Wassel’s brother Dave, a North Shore lifeguard, came in seventh place in this amazing event. If you watch the clip I’ve linked, you see Dave on his board courtesy of a GoPro camera giving us a view from the nose. It was phenomenal. Dave was the only guy who completed four waves in each heat. He wen charge ’em like one beeg bull! Again, his joy became my joy and I was hooting like it was the Eagles at the Super Bowl!

Kaipo also interviewed Bonga Perkins of water patrol. Here’s another guy I would see in the lineup when he should have been at school, LOL. Seeing him as part of water patrol made sense to me, as he and his lifeguard brothers are natural watermen. When that monster set chased all of water patrol to the beach on their jet skis, you know it had to be deafening. No matter where you surf, there’s always that rogue set ready to clear things up, heh.

Finally, it should be noted that Eddie’s little brother, Clyde, paddled out to participate in his last Eddie. Clyde is nine years older me at 66, not 57 like I am (That’s what I initially thought!). I really had a fear for him as he paddled out. I worried about him. I know what it’s like to get tossed by a five-foot wave. Clyde had a sommer-saulting experience down a giant wave that had me moaning out loud at my computer! I guess if you roll with it, you’re probably going to survive. Respect. I am glad Clyde isn’t going to go out into monster Waimea Bay ever again.

No one was hurt. A huge reason to remember this wonderful day.

I doubt we’ll ever see an Eddie like the Leap Year Eddie. What an incredible event.

 

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Refreshing Ginger Cole Slaw


Refreshing ginger slaw is the best because of what it doesn't have.
This ginger cole slaw is the best because of what it doesn’t have.

I love slaw. I love it just about any way it is made. However, with mayonnaise not high on my family’s list of condiments, I had to find a way to have my slaw and they would, too.

This mayonnaise-free slaw has ingredients that make you forget its humdrum white blandness. Fresh chopped ginger, fish sauce, chili sauce, hot mustard — can you say zesty and refreshing?

It certainly is more fun to write about cole slaw than it is to write about how much my #cancersucks. Besides, everyone knows there are always great things cooking at #eatatmoms!

Refreshing Ginger Cole Slaw

  • Shredded cabbage (this melts down a lot so make more than you think you’ll need)
  • Shredded carrot
  • Shredded bell pepper

For the dressing:

  • Julienned ginger, chopped in thirds (so take two inches of fresh ginger, peel it and cut it into thin slices. Stack them and julienne them into matchsticks. Take those matchsticks and cut them in thirds. You have pieces that are about 3/4 inches long and very thin. You taste it before you see it.
  • 1/4 cup brown sugar
  • 1 tablespoon Dijon mustard
  • 1 tablespoon fish sauce
  • 2 tablespoons chili sauce
  • 1/2 cup white distilled vinegar
  • 1/2 cup sesame oil
  • Salt and pepper to taste

Whisk Dressing ingredients in large bowl until emulsified. Add shredded vegetables and toss gently until the slaw is coated well. Serve immediately or store in the refrigerator until it’s time to eat.

A great potluck dish that will have everyone clamoring for your recipe!

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How it’s going: #Cancersucks


I have been injecting the Interferon into my thighs and belly for two weeks now and I’m getting used to it. Since I was diagnosed with melanoma stage 3a las summer, have had my three surgeries and a month of daily high-dose chemotherapy, I have known that this was coming. I can’t say it’s easy, but it probably will be since I’ll be doing it for 11 months.

The cocktail ingredients for my injection.
The cocktail ingredients for my injection.

I set everything up, wipe the vial tops with alcohol wipes, open my syringe, pull it back to get air, and insert it in the saline. I then draw a little bit more than 1cc into the syringe. I then take that and poke it into the interferon vial, which is tiny and has what looks like compressed powder in it. I inject the saline into the bottle and gently swirl it to be sure all the powder has dissolved, all while leaving the syringe in place. I then turn the vial upside down and withdraw the medicine, sliding the beveled point out to be sure I get EVERY DROP. I put the syringe down by sliding the point into the guard. Then I swab a lucky spot on my body, let it dry, retrieve the syringe, squeeze a chunk of juiciness, and poke it at a 45-degree angle. That initial poke is all I feel, and I haven’t gotten used to it yet. After I inject the medicine, I slide out the needle. Once I drew blood, but I haven’t since. I cover the spot with a small bandaid. Why? So I don’t use the same spot two times in a row. A sharps box is the new bedroom feature.

These injections, which occur Monday, Wednesday, and Friday evenings, are really no big deal. Tuesdays, Thursdays, and Saturdays are a bit lethargic and I’m prone to napping.

After the month of chemotherapy at Kaiser Moanalua Hospital, I took a two week break before I started the self injections at home. During that month, I tried to cope, but there were rough days and nights. We have sorted out the right nausea medicine and how to control the fever and shakes I would get a few hours after the shot. I managed to socialize with family who were in town the first two weeks in January. I had a weak and unproductive December, but an understanding family made it all bearable.

I believe the chemotherapy has affected my diet. It was getting more and more difficult for me to drink coffee. I have it with half and half and brown sugar, and I could never get the mix to work. So I dug around the tea cupboard and found chai, which I was enjoying quite a bit. But after a while, I didn’t feel like drinking that either.

All this corresponded with me starting the at-home Interferon treatments. I had learned that when I went back to the hospital on Mondays after a weekend of no meds, it resulted in a very bumpy night. This first night at home was no exception. Fever, chills, the shakes, nausea, all of it. I ran to barf in the bathroom and I missed. Yep, cleaned it right up.

Ever since then, I have not gotten sick. I expected Tuesdays and Thursdays to be as rough as that first go round, but I’ve been OK. I think I found a balance. And I think we figured out what happened. That big sick event was a combination of starting the meds and caffeine withdrawal. What a g*d-damn party. Geeze. As much as I’ve grown to enjoy coffee, I have no desire now. Not such a bad thing.

So now I wake up, have some warm lemon water through a straw so my teeth enamel lasts, and have a nice breakfast with oatmeal — savory with eggs, or sweet with craisins, and maybe some of my homemade yogurt. This certainly keeps me from snacking. I have so much Godiva and fancy chocolates from the holidays that I forget about. I feel slimmer, but every time I get on the scale it scoffs. Whatever. I have cancer and it sucks.

A few weeks ago I ventured out to Boca Hawaii and played DJ. It was fun. I would like to go more often, but I have to take care of myself and the family first. Someday I’ll be back and on the bike. It’s like a prize out there waiting for me to get better.

I had taken myself off the substitute schedule for Tuesdays and Thursdays, but I just put myself back on for availability all week. I feel OK, just a little weak. I have been called to sub at different schools, but I feel like Kaiser High School is best for me since it’s so close to home, the administration knows what I’m going through, most teachers know me, and my daughters are there. So the kids mostly know me, too.

I notice I’m shedding hair. I have bald patches on my head under my curls. Thinning hair is a side effect of Interferon. I may be exploring head covering options soon.

 

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Camp Chemo


This morning on my New York Times feed is a story about the treatment of Hep-C in Egypt with a new drug that costs considerably less there than in the United States. It replaces Interferon, fraught with nasty side effects. I would have to concur.

Today was day eight of 20 daily Interferon-chemotherapy sessions at Kaiser Permanente Moanalua.There is a steady stream of chemotherapy patients that keep the nurses busy. So far, I think I might have seen one person twice. There’s a sign that says no guests, but some people cannot read. Learn, please.

I’m off on the weekends, which is nice. But then it isn’t so nice because when Monday and Tuesday roll around, the misery begins again. Body aches, fever, flu-like symptoms, and my skin hurts so much. The third day of the week is a little better. We’ve been sorting out ways for me to cope. Tylenol, which I used to control fever, was hurting my liver, so I had to cut back. Percocet works well on my headaches, and I also have an anti-nausea medication. I am very dehydrated all the time, so starting today I get 2,000 ml saline intravenously with the Interferon.

Nothing tastes good, not even water. Everything tastes metallic. Really? What was I thinking when I asked if it would be OK to have a glass of wine now and then? OMG keep it away. Ginger ale and apple juice are my new friends. Ginger Rush’s zestiness goes unnoticed in my mouth. Cooking is impossible. It will be a while before anyone is going to #EatAtMoms. I can sip broth.

I have been driving myself to and from my treatments out of necessity. You know how you have to do something, no matter how difficult it is, that you cannot get out of it? There is no point in being a cry baby, you just get it done. Once home, my body has permission to crap out, and it does spectacularly. Fortunately, John will drive me tomorrow.

My hair is expected to thin, but not completely fall out.

You would lose weight, too, if you couldn’t keep anything down.

My whole life certain people have decided I’m fat, no matter what. I expect that if I do lose weight for chemotherapy, I’ll still never be thin enough for them. Shutting down that conversation.

The funny thing is, I’ve downloaded books, I’m watching “Weeds,” and I play Words With Friends with a couple of people. But most of the time I have no energy to do even that. I mostly sleep. If I had the energy, I’d take care of my yard.

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What do you train for?


I am the sort of triathlete that makes the rest of you couch potatoes think you could be a triathlete, too.  I’m always bringing up the rear in races. It’s OK. My run is my weakest leg of the triathlon. For Honu Ironman 70.3 last June, I finished before they rolled up the lava fields, by minutes. But I finished!

My favorite part of triathlons is the training. I have a good solid family at Boca Hawaii. You make true friends. You have people and coaches that will hunt you down if you don’t show up. They make it fun to produce buckets of sweat on the bike trainers in the studio. I try so hard to swim as far as I can under water at the pool (and actually made it two or three times!). I run the hills at Waterfront Park but I get lapped by everyone else. Fortunately for me, most of them say, “Attagirl, Paula!” They are my heroes!

When it comes to race day, I have to admit that I can’t stand the jitters, getting clawed and punched during the swim, freaking out during transitions, losing gas on my bike ride, and knowing I have a 13.1 mile run after all that. I love the bike part, I like the swim part, but I don’t really like the run part.

I did one Honolulu Marathon, in 2012. My husband got a reminder on his Facebook page today with the picture of me finishing, smiling, and so happy to be nearly done with something that hurt me so much — more than eight hours after I started. One thing we are trained to do is to finish looking like a million bucks: SMILE!

Today he reminded me to hold onto that fighting and happy spirit.

Today was my third day in the chemo ward at Kaiser Moanalua. Today and yesterday I was put in the back and was soon joined by three other women. I tend to be quiet, I like to give people their space, but I think I probably come off snooty and rude. So once two of the women started talking, because they were already friends (for years), soon we other two were joining in the conversation.

“What kind of cancer do you have?” Nobody pulls any punches in the oncology zone.

Melanoma, I told her. She was perplexed. I’m surprised because I thought it was common, and because she was haole like me (LOL).

The woman opposite me said, “It’s Jimmy Carter’s Cancer!”

And yes, that is probably the best way for me to explain my cancer. However, we think that mine didn’t get beyond my lymph nodes and into my brain and lungs like our President experienced.

The ladies asked about the drug Pembrolizumab that healed President Carter, and I told them about how I was to be in a clinical trial to test it on Melanoma Stage3 patients, but I didn’t have enough cancer. We all got a good chuckle out of that.

They asked how I found my melanoma behind my leg, and that’s when I told them about how I train for triathlons (clasping my hands behind my knee and stretching my legs). And that’s when they told me “no wonder you’re doing so well!” “You look great! You’re going to beat this!” “This is what you trained for.”

I want to get back into my training with Boca Hawaii again. My favorite, the bicycle clinic, starts in January. That’s when the daily chemo will end, but that’s when the three-times a week self-injections of interferon begin. I can’t commit. I have to see how I’ll be doing.

Do you want to be a triathlete? The training and the community can be so amazing. There are several groups on Oahu, so it’s worth it to find a group where you fit in and feel comfortable.

I thought I was training for races, but I was really training to beat Cancer. During the run of the Honu 70.3 in May, I could not run. I tried so hard, but I couldn’t. But I had trained for six months to complete that race and to finish with a medal. I had never walked so fast in my life. That was my solution. I did what I had to do. And that’s what I’m going to do now.

 

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Interferon inauguration. This ain’t no disco.


Bless their hearts, especially today, because it seemed the oncology nurses in the drip room at Kaiser Moanalua were short handed. They were constantly running around, ferrying cancer patients in and out, answering beeping machines, calling out to each other for assistance.

Interferon is not your garden variety course of treatment, so it threw them for a loop. First of all the Interferon wasn’t even ready for me and they were filling it in pharmacy. I had a great nurse who hooked me up to my first hour-long saline flush, gave me some Zyrtec and Tylenol for the pain, and discussed my melanoma history with me.

You know what happens when you tell them you train for triathlons? “No more marathons for you! At least for a while.”  Hah! Good one. She rushed away. There was no point in clarification. My drip was the highest priority.

My discussion last week with the pharmacist indicated my drip would be 20 minutes, but he forgot about the fore and aft saline flushes. John waited patiently for me in the car.

I developed a horrible case of the chills. They took my temperature, but I didn’t have a fever. The room is freezing and the saline is probably on the cool side. I was discharged and I joined John at the car. And with each step I was feeling sicker and sicker.

My skin hurt all over. I was still freezing. And I wasn’t much of a conversationalist with the guy who doesn’t need me to talk anyway. But I did tell him that my nurse said that if I can get to week two, I’ll be OK. I didn’t think I’d feel bad so early in the cycle. I shed a few tears. Oh, yes, and it’s not the best thing for depression. I could tell already.

I got home and lay down. Duh. Then I picked up my laptop for this update.  I’m waiting for this flu feeling to wear off. I hope it does. We are monitoring my temperature.

I’ll dress warm for tomorrow. I have to nap now. Thank you for reading.

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Thankful for Good News


My plane ticket was purchased, my hotel reservations made, I was set to depart for Salt Lake City on the redeye Monday evening to be screened for a clinical trial that just started enrollment. My appointment was scheduled for Tuesday and I was to meet the trial principal in person. I was so excited. This past week I drank the Kool-Ade, er, contrast, for new MRI and CT scans, got slid into the medical space ships once again, and realized that I was getting to know a lot of people at Kaiser Permanente Moanalua.

But, it is not to be and for that I am thankful.

Yesterday, while subbing world history for freshmen at Kaiser High School, I got a call (during recess) from a nurse at the Huntsman Cancer Center in Utah. She told me she had both good news and bad news for me:

The good news is that I didn’t have enough cancer to participate in the trial. The bad news is I didn’t have enough cancer to participate in the trial.

Yep. I am grateful. There is the stickler of having purchased a non-refundable plane ticket, and having to hustle to get new scans and a CD with the scans and my medical record faxed to Salt Lake City over the last week. And in the last month I’ve had a mammogram, a pap smear, and a fecal culture done, all with terrific cancer-free results.

Does this mean I am cancer free? No, I’m still Melanoma Stage 3a. The original melanoma is gone, the cancer in the sentinel lymph node was removed, but there is no guarantee that melanoma isn’t still lurking in my body. The plan is for me to begin the year of immunotherapy with interferon, and I will probably get started in January. I don’t really want to do it. I believe more that I am a cancer survivor than someone with cancer. Because there are more what ifs to this situation than not, I shall proceed.

My window of opportunity to participate in a clinical trial closes December 7, 98 days after my last surgery. I cannot wait for another trial that might be looking for someone like me. I was willing to be a trial participant, one of those people who help science and future generations as new treatments are tested and determined to be beneficial or not. Thank goodness for those who do. Where would we be without them?

Please hold my two Holy Cross High School ’76 classmates, John Taylor and Jimmy Lafond, in your hearts and prayers. John has Alpha-1 Antitrypsin Deficiency and is a double-lung transplant recipient. He’s had a rough couple of months. And Jimmy just came to in the last few hours after surgery at the University of Pennsylvania for a stem cell transplant to treat his multiple myeloma. Both of these men are wonderful friends who know the value of every moment they are alive.

Be thankful for your health, your family, your responsibilities, and your freedoms.

Happy Thanksgiving.

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Not Letting Cancer Dictate My Life


White roses from my expository writing students, class of 2015. A sweet moment.
White roses from my expository writing students, class of 2015. A sweet moment at the end of the school year. 

Although I am not happy about this setback Cancer has served me, I’ve decided staying home is boring. I miss out on so much. While we are alive, isn’t it a good idea to live?

I’ve started substitute teaching again. What an absolute joy. Well, not quite. Some grades are easier than others. At this point in my life, I can pass on those students who add stress to my day. I don’t need it! Lately, thanks to all the time I spend doing algebra and geometry on the Khan Academy website, I’ve been able to help students in math. ME! OMG! ME! For the last two days I was subbing for 6th grade math and I knew all the material, so it was fantastic to help them. There is beauty in math: logic, rhythm, balance… It might have taken me half a century to realize that, but it’s not too late. Right?

Subbing is satisfying because I get to spend the day, or two, or three, or six months, with students of all stripes.  Some are excited about the future, some believe they have no future, some are extremely motivated, some are hopeless. All of them absolutely brighten up when you give them a chance to shine or if you give them some positive attention, especially the clowns. Praise goes a long way. And at the end of the day, you know what? Just like a mom-mom, I get to give the kids back.

It is easy to spot the stoners and the loners, and often they resist efforts to get them to engage. But those moments will never be forgotten. It may help them someday when they’re feeling worthless. Don’t we all have those moments as teenagers that we draw on for motivation? Something someone said that gets you out of bed today?

And now I have to start thinking about my year of immunotherapy that will begin soon. There will be days, I’ve been told, even weeks, when I won’t want to get out of bed. Thanks, Interferon.

On November 30th, I meet with my oncologist to discuss either the clinical trial I’ve been waiting to begin or proceeding with Interferon course of treatment that will help my body seek and destroy cancer cells in my body. Clinical trials are absolutely the way to go if you can. Think about drugs you have been administered for any of your maladies. Somebody volunteered to be tested with those drugs or procedures and the results determined who would benefit most. While I might miss my chance, since my window of opportunity closes December 6, I still would step up to help with testing.

What Cancer has taught me is that if something comes through, or something does not come through, it’s all OK. You can look at situations that might have felt tragic before but now just seem inconvenient. The hardest thing to overlook are the actions of assholes, and even then you just have to laugh at how ridiculous they are.

I’ve been feeling very contemplative and calm lately. There is a lot going on with my family, my van needs repairs, chores are endless, and there are all the things that come with having two teenager daughters.

I’m proceeding as though there is no cancer. For a while, I had cancer and I didn’t know it. Life was normal. I trained for triathlons, I didn’t get enough sleep, I was letting everything get to me, I craved personal peace. Then I found out I had cancer. It sent me spinning. I had tearful discussions about not getting to see my girls grow up and  realize their dreams with my husband. This was not part of my plan.

But as my surgical wounds healed, so did my spirit and so did my attitude. And it isn’t anything I did alone. The support from my family, my friends on Facebook, former grammar and high school classmates, has been tremendous. Greeting cards and gift cards and meal plans, and prayers and long-distance Reiki sessions — all of these reminded me each day of the value I still have in this world. I have to thank Cancer for that. I plan on spending the next year killing it, but I’m still pretty jazzed about how Cancer has shown me what a gift I have in life.

Someone remind me of that when I am drowning in depression, a side effect of Interferon. I’ll need you. I really will.

 

 

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Poem #10: Pleasure, Sonnet, Apostrophe


Sophie shooting in Waimanalo at dawn.
Sophie shooting in Waimanalo at dawn.

Generational Shift
By Paula Bender

I count her fingers, I count her toes,
I smell her cheeks, I kiss her nose.
My heart swelled when we first met.
Becoming a mother took away my breath.
As my daughter grows and becomes her own person,
I must deny the urge to provide diversion.
For I wish to stall her growing independence,
Because I am desperately clinging to being a parent.
It isn’t fair to hold a child back from life.
It isn’t fair to prevent them from experiencing strife.
But is it fair that a mother’s love should be so frail?
That motherhood subsides and the need for her pales?
My hope is that when she is out on her own,
Our bond forges deeper, our love has grown.

Poem #10: Pleasure, Sonnet, Apostrophe. #writing201

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Poem #9: Cold, Concrete Poem, Anaphora and Epistrophe


Escape to Costco’s Cold Locker
Paula Bender

Chilly Mainland mornings call for pots of evening chili.
Chilly Hawaii mornings aren’t that frequent but we like our chili.

Sticky nights often turn into days that are just as sticky.
Drops of sweat develop even as we towel off shower drops.

So much heat and humidity, we need our relief and so,
Go in the van and drive to Costco and into the cold locker we go.
“I could stay in here all day.” “So could I.”

#writing201

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Poetry #8 Philly Cheesesteak


Foot-long cheesesteak Italiano: steak, provolone, broccoli raab, roasted peppers and onions. Take the canoli. Leave the sandwich!
Foot-long cheesesteak Italiano: steak, provolone, broccoli raab, roasted peppers and onions. Take the canoli. Leave the sandwich!

Philly Cheesesteak
By Paula Bender

Ever since I left South Jersey
In the late ’70s,
My craving for a decent Philly cheesesteak
Has gone unsated.

Toasty hoagie roll,
Transparently thinly sliced ribeye,
Piled high with fried onions and peppers.
Wit? Widout?
To which one would say Whiz or
(Of course) provolone.

Your mouth really can’t go home again.
The memories of my little 12-year-old hands
Holding a hoagie roll overflowing with
Philly cheesesteak has never been repeated
By the so many try hards and copy cats
And food trucks and popups that
I’ve deigned to try.

Sometimes, you just have to recreate that
Memory and
Share the love and
Create a longing within someone
Besides yourself.
#EatAtMoms

Poem #8 Flavor, Eulogy, Enumeration
#EatAtMoms

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Poetry #7: Neighborhood, Ballad, Assonance


 

The Cat’s Job
By Paula Bender

While several of our neighbors have dogs,
You must consider this and give pause,
That the pets in the ‘hood
That do the most good,
are the kitties with sharp killer claws.

If there were a problem with rats or mice,
Those dogs wouldn’t even think twice.
But a fine family cat, a self-respecting one at that —
Would consider such occupation a vice.

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.

Our kitty isn’t the only one who thinks it fun,
To bring home the prey with which it wants to play.
I’ve heard my neighbor scream when she looked out her screen,
To see body parts in glorious disarray.

For it is sport to a cat to bring home big game.
To show up with a critter nearly dead and surely lame.
Once kitty’s announced a victim she’s pounced,
She tosses it up in the air with a jump
And watches it sail like a doomed lump.

We know what to do. We thank with profuse,
As she finally takes her first munch.
We leave kitty to enjoy her well-earned prize,
Knowing full well
That she’s saving us
The spleen
For our lunch.

 

 

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Poetry #6: Face, Chiasmus


Waves outside Waikiki.
Waves outside Waikiki.

Catching Waves
By Paula Bender

Paddling my surfboard into the lineup,
I assess the lineup of game faces, and take my place.
I search for familiarity: Eyebrows that twitch
Wassup?
I take my place a little to the left, a bobbing spectator.
You don’t paddle out and catch the first wave you see.
You wait. You watch.
You watch the faces in the lineup as
They look out to sea and
Read the waves that line up on the horizon.
You watch the lineup as each surfer lines up to be
Just inside the curl as it crests and begins to break
Right or left.
Finally I get my turn and
I paddle like hell.
Feeling the wave rise beneath me I
Come to my feet,
Turning to stay high on the wave I’m
Riding along its edge until its
Face builds beside me.
I tuck in and under the curl, and
For a few soundless second time stands still.
Sea spray dances along the tube’s top,
As it spits me out into the air
And off its face.
I paddle back out
Into the lineup,
Trying to hide the shit-eating grin
That’s on my face.

Day 6: Faces, Found Poetry, Chiasmus #writing201

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Poem #5: Map, Ode, Metaphor


The original melanoma site after it was punched out and stitched.
The original melanoma site after it was punched out and stitched.

An Ode to a Lymph Node

By Paula Bender

A living map beneath my skin,
Red arteries flowing away, blue veins toward
The heart, command central,
Pulsing between my lungs,
Refreshing, reinvigorating blood cells.

There are backroads as well,
That are no less significant.
They sweep and they catch
Pathogens, fats and delinquents.
My gratitude to my lymphatic system,
Courier of lymph fluid, pathogens, white cells.

And Cancer.

A melanoma took root behind my right knee
Just a bump that I felt before I could see.
Punched out, the biopsy was declared malignant.
I went from Stage 1 to Stage 3 in less than a minute.

Scans for my brain, spine, bones and body,
Gave no indication there were others at the party.
But then a beautiful turquoise dye was sent searching,
Disclosing the pathway that this cancer might have gone lurking.

The dye found its way to my nodes to the north,
A chain of fatty pearls just doing their work.
One lit up, a tell-tale sign,
Gorgeous and blue, this lymph node of mine.
This was the sentinel with a job to do,
It held captive that cancer without further ado.

Microscopic melanoma was enclosed in the node,
Which served as gatekeeper in protector mode.
It had taken the cancer and kept it enclosed,
It kept me from being even more exposed.

People ask me how I found that first melanoma.
I had noticed it for months. But I was going to Kona.
I was busy training for my race: Swim, bike, run.
I didn’t want a little skin spot to spoil my fun.

Days after my race to dermatology I went,
I tore off my clothes and put on a paper tent.
A lighted magnifying glass examined every inch of skin,
While we talked about my decades in the surf and the swim.
I turned around and it was easy to spot,
Soon it was punched out and into a cup it was dropped.

My tale might have meandered.
But my message you see,
Is that maps not only send us to where we must be,
They also can show us what it is that we need.

 

#writing201

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Poem #4: Imperfect, Limerick, Enjambment


All for Race Day

Triathletes train every day of the week.

Swim, bike, run. Perfection they seek.

For months they prep for the big dance,

Miles in the bank could pay a big advance.

Unless of course, they short change their peak.

A late afternoon test ride down the Road to Nowhere and back.
A late afternoon test ride down the Road to Nowhere and back.

Paula Bender poetry. Copyright 2015. #writing201

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Poetry course day 3: Skin, Prose Poetry, Internal Rhyme


10/7/15 #writing201 Assignment #3: Poetry course day 3: Skin, Prose Poetry, Internal Rhyme

Dermal Connections
Skin defines us and separate us. Gradations indicate graduation rates and whether neighborhoods have gates or walls of hate designed to bait those whose traits designate them into the lower substrates of our world. But it doesn’t have to be.

Life marks our skin with freckles and moles, oil slicks and zits, wrinkles and folds, and direct hits from the fist, the belt, the shoe, the switch. Veins form beneath the surface, a map of the heart’s purpose. Hair grows, or not, by choice or without, downy and soft, kinky wires or straight, curly, thin, thick. Rainbow hues separate rebellious youth who dare to be different. But we wrinkled kin know it doesn’t. How do you think wrinkles begin?

Skin is history, geography, society, community. Cut sharply skin bleeds. Battles spill and mix our blood as it seeps into Mother Earth. The dust settles. We find that peace and love know no hue. Opposites attract and blend and demand new definitions of beauty, sensibility and posterity. Get beneath someone’s skin to learn who dwells within.

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Editing the Cancer Experience


Melanoma timeline. Who knows how long I had it before it was discovered in March 2015?
Melanoma timeline: Discovered March 2015; dermatology photo July 7; Punch biopsy after one week July 16; Full surgical removal July 30. Planned skin graft was not necessary.

It occurred to me that I’ve been making it easy for everyone to read about my cancer. There are a few things I’d like to share that might make you wince, like this melanoma photo timeline. I realize I’ve made light of my situation, I’ve admitted I’m afraid, and I’ve shared my heart-breaking revelations and the small victories.

Everything has been given a protective coating to prevent certain realities from seeping into my text, for fear I’ll lose our connection, that readers will cringe and leave for good. There’s no joy in no audience. And to make these photos a little more palatable, I’ve given them the Andy Warhol effect. You’re welcome. Still, I hope they are cringeworthy enough for you to cover up in the sun.

Below is a photo that was taken the day after my recent surgery at Kaiser Permanente Hospital Moanalua. It shows the catheter tube, the tape covering the incision where the eight lymph nodes were removed, and a pad covering the drainage tube to remove excess fluid and to help prevent lymphedema.  When I first found out about this cancer, Melanoma Stage 3a, I searched for similar experiences.

Catheter. Stitches over lymph node removal. Bandage holding drain in place.
Catheter. Stitches over lymph node removal. Bandage holding drain in place.

I am still looking for what to expect from a year of immunotherapy with Interferon. I am intrigued by people who’ve done the first month of Interferon, which is quite intense, but failed to complete the next 11 months of fewer and easier treatments. I need to know what made it so hard. I want to read how people suffered with Interferon and still completed treatment. What will I be up against?

Drain for the groin lymph node area. A tube is in place to remove excess fluid to prevent edema. I measure it twice a day and dump it out.
Drain for the groin lymph node area. A tube is in place to remove excess fluid to prevent edema. I measure it twice a day and dump it out.

The next photo is a close up of the hand-grenade like drainage bulb and the log to record how much fluid being extracted. You squeeze the bulb and close the plug to create a vacuum to syphon the liquid from my body.

Like many others, I’ve had quite a few biopsies scraped off my body and sent to labs. All of them came back benign and non-malignant. Five years ago, I wrote about the treatment I had to undergo to recover from years of sun damage on my arms (see the last photo). The doctor told me not use the carac lotion on both arms at a time. I’m glad I listened. It was painful and lasted several weeks on each arm.

The patient.
The patient, positively patient.

Doctors say the damage we are taking care of now was done in the 70s when we kids worked on our tans and spent the entire day in the pool or the ocean. That’s why it’s important to make sure our kids wear the right sunscreen.

My next year of immunotherapy will be a test of patience and resolve.

Is my arm red!
Back in 2010 I had to rub Carac on my arms to remove the sandpaper-like actinic keratoses on my arms that were precancerous.