Irene

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I knew her as Mémé.  Her name was Irene Antoinette Peloquin, and she married my grandfather in the 1930s.  Grandpa, to put it mildly, was not a nice guy.  She stayed married to him, though, until he died in 1980.  She had two children.  She was 101.

I regret that she never met my children.  Ryan and I had fantasies about flying into Florida and driving up the east coast to visit her in Massachusetts.  We’ll never have that opportunity now.  I know she would have been just as patient, loving and kind to them as she was to my brother and I.

She was a beautiful woman.  She attended church every day.  I’m sure that her faith helped her get through the hard times.  She had two young children when Pearl Harbor was attacked and no doubt had trouble making ends meet during the war.

After I got sick, I didn’t reach out to her as often as I should have.  Part of me didn’t really want her to know what was happening.  I wonder now if that was a mistake.

I loved her.  I hope wherever she is, it’s warm and bright.

wait and see

I don’t really believe in New Year’s resolutions.  Why wait until some other day to resolve to do something?  Today is the perfect day to do something.  Having said that, I’ve decided to write every day.  What I have to say might not have anything to do with cancer, but I’ll still write it here.

Instagram - Jan. 8, 2013

Today, I’ve been on Tamoxifen for about ten days.  All of my fears, so far, have been unfounded.  I feel kind of tired occasionally, but otherwise, nothing is happening, which is, I guess, good.  Effexor, which I’m already taking, is given to Tamoxifen users who experience hot flashes, but I’ve had nary a hot flash.  My internal thermostat gets a little weird sometimes, but the sensation is nowhere near what I felt during chemo.


I mentioned my parents’ impending visit a few months ago.  My dad didn’t make it out, for reasons I can’t quite figure out.  I was very angry at him, and I’m still not over it, but I’m more disappointed than anything now.

The myriad ways family members deal with cancer is certainly something they don’t write about in books.  Even the conversations I have with my friends surprise me.  Some friends have never even spoken one word about cancer to me, which, in a way, is comforting.


I’ve slowly gotten back into baking.  I used to bake every week.  In the past year, whenever one of the kids has needed a baked good for a class party or function, I’ve gone to the store.  It made me feel guilty and sort of inadequate.  A few weeks ago, though, Katie needed a dessert for Girl Scouts, so I found my favorite recipe, and started baking, and it felt good.

maroon

Before radiation began, my port was unceremoniously removed.  It’s the strangest sensation, to have minor surgery while still awake.  I know I felt disconnected, as if I were outside of myself but unable to watch.  It seems like they had just begun working when someone said, “almost done.  Just closing you up”.  The procedure marked the end of the worst phase of my treatment, and the only evidence left was a small scar that even now is fading fast.

They gave me my port in a small plastic container, but I ended up tossing it.

Driving to Radiation

I was optimistic, so sure, that radiation would be no big deal.  And for the most part, it was.  It was anticlimactic, even.  I looked at it as a way to motivate me to get up and do stuff.  The whole process, from backing out of the driveway to turning back into it, took forty minutes on a bad day.  The fear of the process was the hardest thing to get over, and when I’d been going for a couple of weeks, I decided that I was a big crybaby.

Toward the end of treatment, though, it started to hurt.

At first, it stung in a mildly irritating way, like right after a long beach trip.  Then I noticed the blisters.  Then I woke up one day, and the whole thing looked like a Stephen King story.  It oozed and was a shade of red that should be illegal, all in a perfectly defined square.  It was beyond nasty, and now I know that Ryan is some kind of demigod sent from heaven, because he bandaged me and helped me keep it clean and didn’t ever complain.

It looks fine now.  It healed very quickly.  When I visited Dr. Nguyen when it was its nastiest, he told me that it actually looked good, comparatively speaking.  I felt grateful that he didn’t think it looked bad, and realized that I was probably lucky.  I know that I tend to have amnesia about my body and illnesses and injury, but I think radiation might have been more difficult than my mastectomy.

Radiation Waiting Room

I met some great people in the radiation clinic.  On the first day, in the waiting room, was a man with an autoharp.  He was playing it and singing.  I watched him, and thought about taking his picture, but decided it would be rude.  I didn’t get to find out if he was a patient or family member because I was summoned into the office.

The next day, I saw him again, leaving the office, with his arm around a lady, who was carrying a rose and a certificate.  It was her last day.  The image of them, walking arm and arm, into a new beginning, made me tear up a little.

inarticulate

I’ve started to write so many times this last few weeks.  I’ve typed a few words, read them over in my head, not liked them, and abandoned them, over and over.

I’m about to finish week two of radiation and I haven’t even written about that yet.

It’s such a strange process.  The drive to the hospital (Hawaii Medical Center West in Ewa) takes longer than the actual treatment.  Luckily, there’s not that much traffic in the mornings when I go.  All told, I’m back home inside of an hour.  I would wonder if anything were happening at all during the treatments if it weren’t for the clicking and buzzing sounds the machine makes.  I’m told to expect some redness on my chest and neck, but so far, there is none.

I was so scared of the prospect of radiation.  And truly, when you think about it, it is scary.  I know that I grew up thinking that radiation was bad and created two-headed babies and other problems.  So opting to get doses of radiation voluntarily seemed counter-intuitive.  It’s surprising how anti-climactic it all is.  The worst part of the process for me is getting undressed and sitting around in a gown.


My eyebrows and eyelashes are back with a vengeance.  I think I missed them, but I kind of liked not having to wax, too.  It’s weird to think there are things about chemo that I might miss.  I will especially miss washing my bald head with a loofah in the shower.

six months, two days

Things are changing.  I can’t say that everything is getting back to normal, because what is normal, exactly?  Radiation might bring a whole other brand of weirdness, but right now, all of the changes are good.

My eyelashes and eyebrows are coming back.  I’ve just now figured out how to draw on eyebrows in a semi-convincing manner.  It’s not a skill I feel I need or really want, so to have eyebrows again will be a relief.  On the other hand, I will have to start shaving my legs again.

I got up today at 7 a.m. for the first time in ages, and I was full of energy and in a great mood. My mother-in-law has been getting up and making breakfast and getting the kids ready for school by herself since chemo started.  I haven’t been fully present mentally or emotionally for the kids during this journey, but today, I felt like I’m coming back to them and to life in some small way.  I have a ton of things to do today, including a support group meeting, but I know I’m going to make it through the day, and that’s comforting.  I’m looking forward to having a routine again.


My parents are coming to town to visit just before Christmas.  I’ve missed them so much.  I know it’s been hard for my mom to watch me go through this from such a long distance.  Mom comes every year, but Dad hasn’t been in quite a while.  He hasn’t seen Alex since he was an infant.  I’m looking forward to seeing him bond with my kids.

phase three

St. Francis West | Photo by Jen Ozawa

Today I met with Dr. Paul Demare at St. Francis hospital in Ewa.  He will be my radiation oncologist.

As anticipated, radiation will take six weeks.  I’ll be going five days a week.  Dr. Demare wants to get started about three weeks from now so that I can continue to recover from chemo.  I have one more pre-radiation visit, during which I will get tiny tattoos just above my clavicle and on my chest to help them aim the machines.  I’m sort of excited about this.  I’ll have tiny badges of honor.

Dr. Demare strongly recommends returning to my old workout routine to combat the fatigue I’ll more than likely experience late in the treatment.  I’m not ready to fully resume yet, but I can work my way back up.  It’s a goal.

The date has been set for the removal of my port.  It comes out on September 25th.  Dr. Nguyen thinks it’s important to have it removed as soon as possible.  He told me that he’s known patients who wanted to hold onto it “just in case”, but he thinks it’s important that we all move on and let go after treatment is over.  Personally, I can’t wait to get it out.

St. John Mililani | Photo by Ryan Ozawa

These past two weekends have been filled with peace and light.  Last Sunday, we overslept and missed mass at Sacred Heart, but on our nightly walk, we passed the church here in Mililani and heard the beginning of the mass and decided to go inside.

I was reminded that the last time I was in that church, it was Ash Wednesday of 2011.  March 9.  I remember that day so well.  It was raining, and I couldn’t find parking.  I had to drive the kids to school and traffic was bad, so I was a little late.

I felt so strong that day; so sure I could handle anything God threw my way.  My faith wavers all the time, but that day, it was there, and I just felt that no matter what, someone had my back.

I was diagnosed 364 days later.  I know now that someone does have my back, but it’s the people here, in my home.  I still haven’t fully worked out the whole higher power thing, I guess.  I’ve gotten guidance when I’ve asked, and I’m still alive, so I’m not ready to count it out just yet.

Kaiaka Bay | Photo by Jen Ozawa

Yesterday, we went to the beach.  I hopped on Alex’s boogie board for a little while.  It was the first time I’d gotten wet in the ocean since April.  It made me so happy, almost unreasonably so.  The taste of the ocean and the feeling of the warm sun on my skin gave me something I didn’t even know I was missing.

pau

Last Thursday brought my last chemo treatment.

In the grand scheme of things, finishing chemo is not a big deal.  Thousands of people go through chemo every year.  I am not the first cancer patient, nor will I be the last. But to me, Thursday was one of the most important days of my life.

Makai Pier

I feel so grateful today.

I am grateful that I had symptoms that were noticeable before it was too late.  I am grateful to the strangers who gave me hugs and asked how I’m feeling.  I am grateful to my oncologist, who didn’t laugh at me when I couldn’t find the right words or ways to phrase my questions. I am grateful to the great nurses I’ve gotten to know in the Kaiser oncology department.

In a futile attempt to show my appreciation, I brought them cookies.  I know it wasn’t enough.

I whine at Ryan every day that I want to be up to full power and doing all the things I used to do, but I know that I am lucky.  This week, I met an 84 year old woman who was diagnosed last year, underwent a mastectomy, and was diagnosed again in February.  She lost her husband two years ago.

I have a great husband who has been with me through this.


While I still have six weeks of radiation ahead, I’m already thinking about the years of hormone therapy beyond.

My oncologist assured me during my last visit that Tamoxifen will be a breeze, but I’m still worried.  Apparently Tamoxifen and Prozac do not play well together, so he advised me to switch to Effexor. I am afraid of the side effects of Tamoxifen, but I’m more afraid that Effexor won’t work as well as Prozac did.  I am scared of entering another downward spiral of anxiety.  Those few weeks in July were so scary and dark.  I never want to feel that again.


I see the doctor again tomorrow.  It’s been a busy week.  Yesterday, I spent the morning with Alex’s class, learning about how his teachers are teaching math.  I had yet to meet most of Alex’s class, and they all wanted to know why I have no hair, and by the way, what’s the deal with the thing on my chest?  Apparently, one girl in Alex’s class has been asking about my hair since the summer.

Their questions made me think.  I was matter-of-fact and blunt with my kids about my appearance and all of the changes, but what about everybody else?  How do other patients handle the questions from their kids or their nieces and nephews?

nurses

Every cancer patient needs a nurse in his or her life.

Doctors will save your life.  Doctors give you a diagnosis, prescribe treatment, and monitor your well-being.  Unfortunately, though, oncologists are specialists and they’re focusing on the really important things.  They’re paying attention to your platelet counts and your side effects.

The most important lesson I’ve learned in the last year is that support groups are great and that I need to be around other people who are dealing with this, too.  I never believed in support groups and therapy before.  I thought I was smart enough to get all the answers on my own when I was diagnosed.  Now I know that it’s not about being smart enough.  Indeed, finding a support group is the most important thing a person can do after her diagnosis.  The company of other patients and survivors is essential to the well-being and sanity of a recently diagnosed person.

These events are also where a patient can meet nurses.

Your oncologist is making all the hard decisions. Nurses tell you things.  Doctors talk about you. The nurses in your oncology clinic talk to you.  They ask about the most personal things when your doctor might not be even considering them.

The truth is, stuff happens during your treatment that your doctor won’t tell you about.

During your treatment, for instance, you may find yourself longing to… get your groove back. Even when you’re not stressed out, even when you’re not about to die from fatigue, things may just not work.  Chemotherapy throws everything out of whack, and even when you’re in the mood, parts of your body won’t be.  And your doctor probably won’t be the one to tell you that.

And things to try? Things that could go hilariously wrong, or be a godsend? Definitely not a conversation for a busy specialized physician.

I admit, I’m afraid to ask my doctor questions like that.  I’m afraid that asking him questions about more personal matters might simply be out of his scope, or make him see me in a different light.  In fact, it was during a visit not with him, but with a nurse practitioner, where the subject first came up.

ACS at KaiserToday, the local chapter of the American Cancer Society hosted one of its regular support group meetings, and the topic of the day was love and relationships. Ryan came with me. It was led by a nursing instructor named Pat, and she was fabulous. She spoke freely, and frankly, and often hilariously, and everyone was comfortable asking questions, expressing curiosity, sharing personal stories.

Before my diagnosis, Ryan and I were in a great place.  Now, things are a little more complicated.  Not worse, not better, just different.  It’s taken a little adjustment.  But today made that seem totally okay.

During my treatment, I’ve collected a lot of phone numbers from people who work for my HMO.  I’ve used them, and they’ve helped me.  I’ve learned a lot of things just from talking story with my oncology nurses.  I’ve learned that there are bunch of people who want to answer my questions, or just talk.  I’ve learned that it pays to get familiar with the people I see in the clinic every week.

It took me a while to figure out that I didn’t know everything.  It took even longer to accept help.  Help is there, and it makes all the difference.

fuzz

I feel pretty happy.  In eight days, chemo will be over.  Things are going well.  The kids are well-adjusted and I have a lot of energy.  But sometimes, I feel angry.

Just sometimes.  At random moments.  And I can’t even really tell you what I’m angry about.  Being in the chemo chair makes me angry, and sometimes church makes me angry (that’s a story for later), but it never lasts long.  I didn’t quite know how to handle it, except to shut myself off from the world as best I could until it passed.

Music has always helped me work through stuff.  I’ve always found in stressful times that the right kind of music can smooth the rough edges and calm me down.  As I’ve been going through this journey, though, I hadn’t found that certain music to crank up whenever I’m cranky.  I found it when I was in the car and my iPod shuffled to “Disconnected” by Face to Face.  Listening to that loud, angry song was cathartic.  I needed more.

I’ve discovered this week that I love punk music.  I’ve listened to The Ramones and Minor Threat and Black Flag this week, and maybe not coincidentally, I’ve felt more positive than I have all year.  There was a time when I thought punk was just noise, and maybe it is, but it’s therapeutic noise.  I’ve come to appreciate any musician that can express rage and negativity in a creative way.  I wish I could do that.


There’s a layer of fine, white hair on my head now.  Just fuzz.  It’s especially noticeable around my temples.  I wonder if this is a precursor to hair, or if it’s going to come in white.

cacophany

Usually the chemo room is fairly quiet. There’s a low murmur of conversation, punctuated occasionally by beeps and alarms from the machines. Yesterday, however, it was not quiet.

Shortly after I sat down, as I was digging into “Game of Thrones” on my Kindle, two women came in. They were talking about yoga pants and tofu in what is referred to by those of us with kids as “outside voice.” They were SO LOUD. They were talking like two soldiers in the middle of a fire fight.

I put my book away, so suddenly and completely pissed off at the world that I launched Spotify on my phone and put it on the punk rock radio station. I briefly considered singing along to “Beat on the Brat” by the Ramones at the top of my voice, but decided I might scare people.

Then the snoring guy came in.

Two weeks ago, I watched snoring guy snore so loud that he made the kid beside me jump. Several nurses laughed. Yesterday, he came in, and he was even louder.

At first I thought the backhoes outside the window were making the racket, but I realized that the backhoe wasn’t moving at all. I heard snoring guy OVER the punk rock station. I realized too late that I could have recorded him. I know that’s not very nice, but it was honestly so funny. At a certain point, don’t snorers get so loud they wake themselves? He was still sawing logs when Princess arrived.

Princess is like a pop diva. She made another patient vacate her favorite chair, which is actually my favorite chair, so had I picked it yesterday, I would have been screwed. She was starting phase two of her chemo treatment with a new drug, which she didn’t understand, even after it was explained twice, petulantly declaring that it had better not make her sick or she was never coming back.

About a month ago, she insisted on maintaining a conversation with an elderly woman who was clearly hard of hearing. She responded to the lady’s continuous confused expression with escalating shouts.


A couple of Saturdays ago, Kaiser Permanente hosted an event called “Oncology on Canvas.” It was designed to be an artistic outlet for patients and their families. I knew I wanted to go, just as I’ve been going to a therapist and to support group meetings, as a way to connect with other people.

I was insecure, though. I’ve never been artistic. I lack perspective and I can barely draw stick figures. I worried for days about what to paint and if I’d even be able to put the vision in my head down on canvas. I was still staring blankly at my canvas when Ryan pulled out his phone and called up a photo of Hilo Bay. I had my inspiration.

It’s not Monet or anything, but it’s surprisingly good, for me. It’s hanging in Honolulu Hale right now, alongside Katie’s and Ryan’s. It’s kind of made me want to take up painting.