Superstitious After All

I finally made good on a request a friend asked of me. She needed a photo of me holding a sign that read the number of years I have been a cancer survivor. She’s making a video.

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I paused as soon as I drew the heart on the exclamation point. Seven years. I wondered if I should actually write seven years. It won’t technically be lucky number seven until October 23rd. Rationalizing that I couldn’t write 6 years, 11 months and 7 days, I drew the number, snapped the picture and buried the sign in a stack of papers.

I wouldn’t consider myself superstitious, though.

I make wishes for safe travels before boarding an airplane and always count an even number of seats from the aisle to where we sit in a movie theater but I think these things are acts of being anxious, not superstitious.

So what’s with being superstitious over 16 days?

For me, it’s about due course. Holding off on celebrating allows me some sense of control that I don’t fully understand.

Though I read an interesting article from the Journal of Clinical Oncology that explains my reluctance to turn the calendar page. It says “superstitions provide people with the sense that they have done one more thing to try to ensure the outcome for which they are looking and may actually result in a placebo effect, relieving anxiety and promoting positive thoughts.”

So I wait for the 23rd and hope the heavens above recognize that I haven’t been boastful or overconfident this year and grant me an eighth.

Maybe I am superstitious after all.

A Daughter’s Perspective: Amanda Thompson

Today’s guest post comes from Amanda Thompson and breaks form from the others this month as its author has never been diagnosed with breast cancer. I thought it was important to feature a story from a daughter’s perspective. Amanda’s mom was diagnosed with breast cancer nearly fourteen years ago. A heartfelt read.

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Amanda and I first connected on Twitter about a year ago after I had been tweeting about the breast cancer storyline on Parenthood. Amanda said she could relate to Haddie’s storyline. If you’re a fan of the show, you might remember that Kristina and Adam waited to tell their daughter about Kristina’s diagnosis so not to disrupt her studies at college. Anyway, long story short…Amanda’s parents also waited to tell her about her mother’s diagnosis.

Tell us how old you were when your mom was diagnosed? 

I was 22 when my mom was diagnosed. She was 58 years old.

What was your reaction?

I can remember being really scared and thinking immediately that it was a terminal diagnosis. I was really uneducated about breast cancer and I thought I was going to lose my mom. I was young and didn’t realize cancer is something you could survive.

Tell us about how your parents waited in telling you about the diagnosis.

It wasn’t kept from me, however my parents did delay telling me.  I was on spring break when they found out, they waited until I got back and I feel it was downplayed.  I related to Haddie because just like her I made a surprise visit to my mom in the hospital when she went through her double masectomy.  I did not tell my family I was coming because I feared that they would tell me not to.

Have you been tested for the BRCA gene mutation?

No. The doctors really feel that my mom’s cancer was caused by hormone replacement drugs she was on for ten years.

Has your mom’s experience with breast cancer taught you anything?

My mom’s diagnosis taught me that cancer can be beat.  She is a survivor, still living cancer free since 1999. I am also no longer afraid of cancer.  I have read a lot about cancer and have also decided that you can drive yourself crazy worrying about all of the things that may or may not cause cancer. Therefore I believe in early detection versus prevention because I refuse to live in fear. I think it is very possible that I will have a cancer diagnosis sometime in the future and plan to fight like a girl if and when that happens. I am constantly inspired by survivor stories of many that have already gone through this.

10.30 Refuse Fear

Amanda wanted to share this poem she wrote shortly after her mom’s diagnosis. I think it’s a lovely way to wrap up this month’s breast cancer series.

The Hug

When I arrived home from spring break and heard your news,
The only thing I wanted to do was go home and hug you.

Three hours away, why’d you have to be so far?
But I decided you were worth it and got in my car.

On my way there I started to cry.
Thinking of the pain you’d go through and the chance that you’d die.

I quickly erased that thought out of my head,
And began to think happy thoughts instead.

I remembered all the times you were there for me,
When I needed a kiss because I’d skinned my knee.

I knew then everything would be OK,
And I will be there for you in every way.

But for now we just have to wait,
And see what will happen, leave it to fate.

God’s on our side, you wait and see,
Believe in him, he believes in you and our family.

As I pulled up into the drive,
I wondered if you were waiting for me to arrive.

I ran in the house and into your room,
Expecting to see a face full of gloom.

Instead you gave me a smile and a warm embrace,
And a huge smile grew across my face.

That hug told me you would be all right.
Will I worry again? Well, I might.

Soul-Searcher: Lynette Zwerneman

Today’s post comes from Lynette Zwerneman. It’s a lengthy read, full of intimate and soul-searching details about how one comes to accept life after a breast cancer diagnosis. Such beautiful descriptions from a truly interesting journey. Read and share.

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Tell us about your diagnosis.

For several years I had been experiencing health issues, including veritgo, chronic pain and fatigue. I was also under a great deal of stress due to life and financial issues as a single mother.  Last July, while slipping on a camisole, I felt a lump on the top of my right breast. I knew it was wrong. Though I did yearly exams with my doctor, I wasn’t real good about self exams and had never had a mammogram as I assumed I was “low risk” not a smoker, nursed children. My father had died of lung cancer at 62 and had worked around asbestos on the railroad and both his parents had died of cancers – abdominal masses- no female in my family, paternal or maternal relatives had been diagnosed with breast or cervical cancers.

My health care provider did not feel what I felt but she did order a mammogram. The mammogram was “clean” but because I felt a mass and had other health issues, the radiologist ordered an ultrasound which did show a mass in the region where I found a lump. I saw what he saw, it looked to me like a little starfish with arms beginning to sprout. It didn’t look good. The radiologist categorized the mass as BIRADS 3, probably not but maybe cancerous and I was advised to return for another screening in three months. I wasn’t comfortable with this recommendation and asked for a biopsy which did indicate stage I invasive ductal carcinoma. Estrogen/Progesterone positive, HER-2 negative. A relatively small tumor estimated to be 1 cm and the most common type. I had a good prognosis but mastectomy was recommended as the tumor looked like a Grade III and considered “aggressive”.

What was your reaction?

As I told the doctor – a stand in for the surgeon who had preformed the biopsy, I was “shocked but not surprised.” The community I live in has a higher rate of breast cancer diagnosis and death than the nation. I have been surrounded by diagnosis, caregiving for my father during his treatment and death from lung cancer, a care giver for a co-worker and former relationship during colon cancer treatment and supporting another coworker and friend during her diagnosis and treatment. I had been sick for so long, I knew I could not handle chemo and wondered about other treatment. Watching my father’s horrific death from lung cancer in 1996, the continual assault on his body by treatment of the day, I had already vowed to never undergo chemo. As I had been living with the sense of dying a part of me thought that was where this was headed. And although I deeply love my children and grandchildren, I had been so sick and struggled for so long I actually felt I didn’t or couldn’t care if I lived or died.

What kind of treatment options were presented?

Treatment truly was “one step at a time”. I knew I wanted “It” out so I chose to leave my small rural healthcare system and was referred to a state hospital where the surgeon thought I was a good candidate for lumpectomy and also sentinel node biopsy. A month after diagnosis – wanted to get in sooner but surgeon said he thought it was a slow grower – I got “It” out. The surgery went “beautifully” so I remember the surgeon telling me as I was coming out from anesthesia – clean margins and no sign of cancer in nodes. It was such a relief to have chemo “cancelled.” I went home to heal and think about radiation and other adjuvant treatment. However within 10 days, the surgeon called me and said that due to what “they saw under the microscope” as far as the actual tumor, chemo was back on the table. I was devastated, continued the online research I had been conducting all the way along and found the Oncotype DX test. The surgeon declined my request for the test – possibly because it is expensive and I am a Medicaid patient. I left that healthcare system and was able to be seen at Seattle Cancer Care Alliance. There, I was told again I should consider chemo and also not undergo the partial radiation I felt was best for me. Though, the Seattle doctor said “he would lay money” on the fact I would have a high score – indicating greater chance of recurrence and need for chemo and more aggressive treatment, he did order the Oncotype DX. Amazingly, I had a low score. Chemo was still recommended but I felt comfortable declining. Because of the low score, I was a candidate for partial targeted radiation over the course of 3 weeks. I was prescribed Letrazole, which I took for six months before switching to Anastrozole when joint pain and other side effects became more than I wanted to deal with.

How has having cancer affected your well-being?

I was probably already in menopause by the time I received my diagnosis, which was a good thing as the Aromatise Inhibitors seem to be “better” and more effective as I understand with less side effects. As I moved into menopause, and also grandmotherhood as a single woman, my focus had already turned to other things in life and I had not been concerned about sexuality for some time prior to my diagnosis. I don’t miss it actually. I am not ashamed of my body – age, surgery. I don’t care to share it with anyone and am happier about where I am at in that regard than I ever have. The other thing, my last relationship was with a man who had a colon cancer diagnosis. I cleaned up a chemo spill from a bag he was sent home with and slept next to him while he received treatment. Four years later, I got a cancer diagnosis. You have to wonder …

I  struggle to keep weight on – total loss is 40 pounds. Couldn’t lose weight before. No sign of metastisis. I did quit eating meat when I got my diagnosis and dairy and had already cut out alcohol and was pretty organic. But at the start of the weight loss, I was downing two pints of Haagen Daaz a day just to try to keep weight on. My body in many ways, despite treatment for chronic pain, joint swelling and other issue feels younger than in my 40s. I am now 54. It’s a mystery.

You went on quite a soul-searching adventure after your diagnosis. Please share it with us.

I left Seattle Cancer Care in tears last October because I was refused the radiation therapy I wanted and chemo was still recommended. Deep down I wasn’t sure I wanted to live, to continue fighting. I knew I needed to see my adult children. And I knew they needed to see me – my daughter who was finishing her last year at Oregon State University, a point guard on the women’s basketball team – was disappointed that I would probably miss her last year of amateur play; my son and his family including a grandson who lived in Denver and another son, my oldest and his three daughters who lived in Louisiana.

I had driven to Seattle, I could not afford to fly. So, I drove to Oregon and spent a couple days with my daughter. And then I headed south and across country to Louisiana, stopping in Utah’s majestic Canyonlands, where I had found solace and comfort in other trips. It’s the red rocks and the desert, the warm … I drew strength from that environment. I knew I wanted to see Mesa Verde, the home of the Anasazi who had moved their homes from the top of the bluff to the bottom of canyon to underneath the ledge before disappearing. Sleeping in the car for a few hours then driving, driving … I was able to spend an afternoon at the Mesa. Touching rock, marveling at the structures, understanding the concept of what people do to survive …. You adapt, you adapt, you adapt and perhaps you leave everything behind to survive. Then on south and across through New Mexico stopping at Truth or Consequence to soak in the hot springs spa, then across Texas. It was perfect just to be in the car. At a certain point I realized I probably had the idea that perhaps if I just kept going, cancer wouldn’t catch up with me.  Spending precious time with my Louisiana people, my granddaughters, reticent at first, a little afraid of Gramma, who knows what they thought three from one year to six years of age, they had been praying for me. I suppose they thought I might die or be almost dead. But here I was … driving up, real, alive. Then it was north to Denver but first a jaunt off to Taos. There was an adobe church I had found on a previous trip. On the wall was a painting of Mary in the Desert appearing before a shepherd. I wanted to see that painting. I wanted to pray in that church. When I got there, I felt empty. I knew I should pray for healing. But I couldn’t even do that so I got down on my knees and I prayed simply for the desire to live. I began to cry. That was something at least. I got up and left the church. When I got to my car, I received a call from a doctor in Montana who was at a hospital affiliated with Seattle Cancer Care. This doc was young, just out of Harvard. I had met with him prior to leaving for Seattle. “I am just calling to check on you? We’re concerned you haven’t made any further treatment decisions.” I began to cry again. “I’m in Taos, at a church. I don’t know what to do.” I said. “What do you need from us,” the doctor said. “We are here for you.” No one had said that to me yet. I told him I wanted to wait for the Oncotype results but I would make an appointment too see him and a radiologist when I got home. From that point, I decided to fight. I saw my other son and my grandson in Denver. I went home to my small town in Montana. I prepared to do what I knew I needed to do to live.

10.23 You Adapt

It took much longer for my Oncotype results than expected. Several weeks went by. Finally I had an appointment with the doctor who had called, who is now my oncologist. I was prepared for anything. He went over the chemo options, the mentioned radiation and hormone therapy. Finally I asked “so what was my score doc?” He shuffled thru papers, cleaned his throat and said “well that’s the interesting thing, you got a 15 … (out of 100, 18-20 break point for “low” which means chemo not recommended) I jumped up, arms raised, fingers in the air and walked around the room. “But chemo is still recommended,” he said. “Deal is a deal doc,” I said. We had agreed low score meant no chemo; high score meant chemo; medium score, we’d talk about it but probably chemo.

During this time I left my home of almost 30 years, and older house with lead paint and other issues – never spent another night after Seattle, staying at a friend’s house which was more comfortable and I felt healthier. I don’t hesititate to tell people how I think or what I feel – I try to pay attention to my body and my enviroment. I am living the life I was supposed to live, back at my family property. Trying to farm. Taking care of my mom, whom I had at least a tempestuous relationship with. A former reporter and writer for several years, I am trying to document for myself, my family and others what “happened” and still not sure what did. I don’t know what the future holds but I do know that there is something beyond the day to day grind. Sometimes God grabs you by the shoulders and turns you around to face your mortality. I am not greedy for Life but I do want to Live. I got a chance to Live. How long? I don’t know but I have no regrets about the decisions I have made the past year. I know that I will have more decisions ahead but, one day at a time.

What lessons have you learned?

Perhaps the greatest lesson of “surviving” cancer or getting through the first year is … you do learn you can to “deal with it.” I have given up several times but something always happens to keep me going. And there’s my family, my children and grandchildren. They keep me going. I won’t give up because I want them to know that you never give up …

Final thoughts?

I don’t recommend anyone do anything I’ve done. I have always questioned things. I have friends who have gone through treatment in the traditional way, and they are doing well. I just couldn’t do it that way. That’s just me and I am very grateful to have made more personal choices even those which are becoming more accepted. I guess it’s a “good” time to get a diagnosis, if it was going to happen. I am grateful to every woman who went thru this before me, even those who wouldn’t or couldn’t share their experience. Unfortunately, cancer seems to be more and more a common experience. There has to be an answer. There are no accidents … I demand answers and options not just for me, but for my daughter, my granddaughters. It is a heavy burden in a sense that my family’s breast cancer history began with me.

New Breast Cancer Gene Study | Update

Late last month I wrote about a new breast cancer gene study I was planning to participate in.  A few days ago, I finally received the blood collection kit in the mail.  All that’s left of me is to have my blood drawn, Fed-Ex it back to the University of Washington, and then wait…anywhere from six to twelve months for the results.

What kind of results, you’re wondering — or not, but I’ll tell you anyway.

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The King Lab at the University of Washington has been working on this study for a long time.  They’ve recently expanded the study to include women who were diagnosed with breast cancer at age 40 or younger (me, me, me!) and also women diagnosed with triple negative breast cancer (not me!).  The researchers believe that women diagnosed with breast cancer at a young age are likely carriers of the “breast cancer gene” — also known as BRCA 1 and BRCA 2.

Yeah, but…my results were negative when I originally was tested for BRCA 1 and BRCA 2 back in 2008.

Apparently, genomics technology has come a long way since 2008.  So, they will re-test me again for BRCA 1 and BRCA 2 plus ANOTHER 20 genes they believe may or may not play a role in inherited breast cancer.

So, it’s quite possible that my BRCA 1 and BRCA 2 results come back this time and reveal that I am a carrier.  Or they can find an abnormality in one of the other 20 genes.

Part of me wants to be a carrier of  the “breast cancer gene” or some type of altered gene — because this will shed light on why the hell I developed this disease.  But the other part of me absolutely does not want to be a carrier for the sake of my little sister and my own daughter and the future of their health.  As always, there is no easy answer with breast cancer.

I’ll update you again in the next six to twelve months!

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In other crappy cancer news…

Dr. Susan Love recently announced that she has been diagnosed with Leukemia and will take a leave of absence to undergo treatment.  This.Totally.Sucks.

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And finally…today is the day for my quarterly check-up with my oncologist.  If you’re curious what an appointment like that entails, check out “Tis the Life of a Former Cancer Patient” which I wrote in February.  Fingers crossed that all goes well.

Have you understood a word of this post?  Got a breast cancer question?  I’ll answer the best way I know how!