My Stage IV Cancer

Many cancer survivors actively look for other survivor’s disease stories.  We do this for many different reasons.  So here I have listed a very brief timeline of my cancer.  If you want more details about any aspect of this, feel free to post your questions or email me at suzy@thecolorofhopeblog.com

PRE-STAGE IV CANCER

So when did my journey with cancer begin?  What’s the pre-stage IV diagnosis story?

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I was 33.     I dreamnt of my grandmother, who died of breast cancer when my mother was still in high school.   In this dream my mother and father were sleeping in our house.  I awoke in bed next to my sleeping husband and heard a woman sobbing.  I move through walls to  follow the sound and see my grandmother, head bent in tears.  I come back into my body as my mother bursts into my room and we run into each other’s arms.  We are overcome with joy, because we have both seen this woman reaching out to us from the other side.   My second emotion, though, is dread.  I know this is a warning for one of us, my mother, me or my infant daughter.  And I am ashamed to say that in that moment, I desperately hope it is my mother.

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I was 37.  It was Fall 2003.  I felt a tingling in my nipple, a bit like letdown felt when I breast fed my daughter.  I looked into my bra and saw a line of blood trickling down from my nipple, prompting my first trip to the nearby “Breast Center.”    Mammogram and ultrasounds were clear.

I was 37.  It was Winter 2004.  I dreamnt my own death.   I was moving out of this earthly world and I could see the faces of those nearest to me, family, friends, colleagues and acquaintances.   Each person had a unique reaction to my death, reflecting their own fears and anxieties around mortality and their own feelings of grief over me.  I passed into another space and was in the presence of a being that exuded every flavor of love imaginable; the love of a child for a parent, the love of a parent for a child, the love between lovers, lifelong friends, the love inspired by beauty, the love of empathy…all of it.  I asked this being questions from the deepest part of my heart and I was answered, but the only thing I really can translate in that answer was a sense of “not yet” and an anticipation of something important to come.  I conceived my son that week.

OLYMPUS DIGITAL CAMERA
OLYMPUS DIGITAL CAMERA

I was 39.  It was Spring 2006.  I had finished weaning my son and found that my nipple would get a slightly swollen feeling and a gentle squeeze could often produce a fine spray of blood.  Mammogram and ultrasounds were clear.

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I was 41.  It was summer 2008 and I was kayaking with my husband, my 8-year old daughter and 3-year old son on Lake Crescent in the Olympic National Park.    I hooked my thumbs under my arms, flapped my elbows and crowed with pride about my stamina and strength.

One of my thumbs pushed against a firm, grape-like mass.  Mammogram was clear.  Ultrasound almost missed it.  But the lumps under my arm and the history of the bleeding nipple made them look really really hard.

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They found it.  Eventually we learned through a breast MRI that I had DCIS all through my breast.  The tumor was 2cm.  2 out of 10 lymph nodes were positive for cancer.  The two nodes I had felt with my thumbs.  The cancer was hormone receptor positive (HR+ with ER – 100% and PR 90%) medium grade.   I was a stage IIB.  I did a double mastectomy, because I liked the idea of a flat chest better than reconstruction options, and I did chemo.  TAC every three weeks for six doses.  TAC was harsh.  Still, I was able to work a reduced schedule, take care of my young children (ages 3 and 8) and lead a kick-ass Campfire USA group on numerous adventures.  I opted out of radiation, because I developed lymphedema and the research on the effectiveness of radiation at that time for my stage cancer was ambiguous.

OLYMPUS DIGITAL CAMERA
OLYMPUS DIGITAL CAMERA

I asked my surgeon if she could estimate when the cancer started growing based on the size and the grade.  She said yes.  She said it probably started growing about 8 years ago.  About the time I had that dream about my grandmother.

2009 – 2011  Tamoxifen     This time period was where I felt the most disease related personal challenge, on a pyschological level.  Memory issues were very intense.

2011-2014   Aromatase inhibitor, anastrozole (Arimidex).   Without medical supervision, I stopped taking the aromatase inhibitors in 2014.    I was just sick of cancer and had irrationally decided not to do cancer anymore.

STAGE IV –

2013 – July

Bloating and pain during sex prompt a visit to my new Primary Care Provider, a breast cancer survivor herself.  Linda Van Hoff from Primary Care Redmond sends me for an ultrasound of my liver and lady parts.  All scans are clear.   We attribute the pain to geographical and climate issues created “down South”  by bearing large infants into the world and a chemo-induced menopause at age 41.

2014 – March

Our annual sinful and indulgent girls’ weekend alcohol consumption makes me really really ill the day after.   I never get hangovers.  My back also starts hurting really badly for a few weeks and I’m unable to swim my usual 1.5 miles a day.  I chalk it up to old age.  In a few weeks I’m back up to my usual 1.5 miles a day.

2014 – June, July, August

One of my nearest and dearest friends/chosenfamily has signed up do to a rowing course with me.  After cleaning my mom’s trailer down in Eugene, OR, I suddenly have a big, bold burning pain in my ribs.   It hurts like hell to laugh!  A nurse and instructor who works with me tells me to get it checked out because it sounds like a rib out of place.

One xray and one ultrasound later and I’m in my PCP’s office to hear the results and her nurse calls out “Dr. Wahl is on the line.”  “I KNOW WHAT THAT MEANS,” I tell her.

More scans and a liver biopsy.  The diagnosis is clear.  Innumerable small tumors in my lungs.  Cancer in my bones throughout my torso, including a complete invasion of numerous vertebrae.    Liver has multiple very large lesions, including one that is over 10cm.

Cancer is still ER+/PR+ and HER2-.

We start with Femera and Fulvestrant, a hormonal treatment that often works when a simple aromatase inhibitor is no longer enough.  I also take Zometa, to keep my bones in a state that is more resistant to cancer.

August for a stage IV survivor

I’m still swimming, but no longer doing flip turns.  It’s too painful.  My back hurts enough that I don’t carry my own bags from the grocery.  At one point, while vacuuming, I suddenly have the sensation that someone has torn my pelvis in two.  I can only shuffle forward with very small steps.  I can’t turn or go backwards.

A quick 10 dose radiation therapy cures all of my hip pain and I’m back to flip turns and my 1.5 miles!

But the Fulvestrant and Femara treatment isn’t working.

Tumor markers are doing this:
August for a stage IV survivor\

And scans show a mix between reducing tumors, stable tumors and growing tumors.

September, October, November, December, 2014 and  January 2015

I move to Affinitor and Femara and have much better results.

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I have some minor anemia and fatigue and I get a few mouth sores for a week or so, but Affinitor keeps me skinny!  I get to eat cheeseburgers and fries and not gain weight.  Plus I’m now pain free.  100% pain free.  I’m travelling to Whistler with my girlfriends,  the Oregon coast with my extended family and Hawaii with my spouse and kids.  My mother dies at Thanksgiving.  I’m taking care of my own cancer stress, my grief over my mother, her memorial, my travels, my family and work.  And I feel pretty darn good.

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February – August, 2015

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Yep.  My cancer gets too smart for Affinitor.  And my damn insurance company has found a group of oncologists to say that taking “The Red Devil” Adriamycin is just as good as taking Doxil, so they won’t cover Doxil.  Doxil uses fat to encapsulate the toxin and has much lighter side effects.  You don’t get heart failure, for example.  And you don’t lose your hair.

So we start on Taxol.  And I lose my hair.   But it’s pretty good.  My appetite is good and food tastes great (gained 15 pounds).  I have minor fatigue and anemia, but the steriods give me a really good boost each week.  I really enjoy the connection I feel when I see my medical team every week, so the weekly dose works for me just fine.

A glitch happens in August 2015.  I take a 3-week dose instead of a 1-week dose and the side effects are MUCH MUCH worse.  Neuropathy, some nausea, digestive issues, myalgia pain…  And then I take an addtional three weeks off treatment.  All of this is so I can spend 5 1/2 weeks in France.  Yes, poor me!  🙂

You can see what this break does to my tumor markers in the next chart.  And right now, we’re watching and waiting to see if Taxol can keep working for me.  It’s like having a cliff hanger episode on TV, but each week the cliffhanger just keeps hanging there!  Argghh!

TumorMarker 27.29 Oct 30 2015

The little blue line can’t decide whether to trend up or down.  So it looks like we’ll be taking a peak inside with another PET Scan.

Wish me luck!

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3 thoughts on “My Stage IV Cancer”

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