Monthly Archives: September 2012

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.

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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.