Wednesday, October 2, 2019

The Elephant in the Pink Room, Metastatic Breast Cancer

It's that time of year again, Pinktober, or October Breast Cancer Awareness Month.  I've got a whole new take on this now that I've got a PhD in cancer camp.  I survived a Stage 3 diagnosis of invasive lobular carcinoma breast cancer and had 5 months chemo, a bilateral mastectomy, radiation and tamoxifen.  Well now if this ain't a bitch, over eight years from that diagnosis thinking I was 'cancer free,' I was diagnosed with Stage 4 or metastatic breast cancer.  Before you go pink, with all its ribbons and bows, cutesy Tshirts and memes that say things like "Save the Tata's" I'd like you to hear a new perspective on this from someone diagnosed with what is considered incurable.  Stinkin Pink Tink, that's me.  Oh and by the way, with all your good intentions, copying and posting breast cancer memes on your social media never helps anybody no how no way.

There is a big ol elephant in the Pink Room that nobody wants to talk about. There is a serious lack of funding for the only breast cancer that kills.  You rarely see these words "metastatic breast cancer" on any of the cheerful hopeful posts by some of the largest cancer organizations.  It's the breast cancer that no one wants to acknowledge or talk about, even though it is exactly the one that most of the focus should be on.  Metastatic breast cancer aka MBC, or Stage 4 breast cancer.  Considered terminal or incurable, with 40,000 US women still dying of it every year.  Despite the hell I went through over eight years ago, looking back now losing my "tatas" is the least of my worries now.

I was very sad to hear of the passing of esteemed and legendary journalist Cokie Roberts. After that reality slap in the face, it was like a kick in the gut when every news outlet described her death as "complications from breast cancer.' What in the hell?  Call it by its name! Say it.  If you want October to spread awareness about breast cancer, then we need to educate people on MBC.  Nobody dies when breast cancer is just in your breast or a few lymph nodes.  It's when that same cancer spreads to other parts of the body or metastasizes that it is considered incurable.  All of the current treatments for MBC won't cure it, they are merely a stop gap measure to enhance progression free survival before inevitable death.  The median survival after an MBC diagnosis is three years!  Three years!

Stage 4 needs so much more.  It is so disheartening that so very little of the millions of dollars raised for breast cancer doesn't go towards the breast cancer that kills, but continues to go towards pink ribbon campaigns, so called awareness and early detection. How bout early prevention, and how bout a lifeline for those of us way past that?  I often posted here "I hope I am in the one in your eight." This refers to one out of every eight women will be diagnosed with breast cancer in her life time.  Now I'm learning that one out of three of those will go on to metastatic breast cancer, and ultimately die from it.  All the hype about early detection isn't good enough when 30% of early breast cancer diagnoses still go on to MBC even years later.  I used to think 'Wow I made it past five years, "cancer free"lucky me!  With every year after that I looked over my shoulder less and less. Little did I know the statistics about MBC or secondary breast cancer coming back years and years later.

Metastatic breast cancer is like the dirty little secret of Pinktober.

Pink doesn't cure cancer.

Men get breast cancer too.

Research is desperately needed.  Dedicated dollars towards MBC research.

Stage 4 needs more.

We are coming out of the shadows.

We be dying out here.









Here's one way you can put your thoughts and prayers and money where it'll count! Click on that link to support Metavivor!

Thursday, April 11, 2019

Ten Things your Friend with MBC Wants You To Know

Well hello Dear Reader.  I thought I'd share this great article with you that I so relate to!  It's not easy to educate people about metastatic breast cancer  (MBC) while I'm trying to get up to speed on it myself! Quite a bit has changed since I was first diagnosed with breast cancer in 2010.  I had no idea that a significant percentage of those diagnosed with early stage breast cancer go on to have a recurrence, and in my particular type of breast cancer (lobular carcinoma) it can often return years later! 😨 I'm grateful for the new pill forms of chemo I'm on right now, like Ibrance, that is helping people like me live longer without progression of the disease.


I appreciate all the love, concern, support and prayers I've received since finding out my breast cancer returned.  You may find this article helpful in your understanding and answering some of your basic questions about what it's like for me living with MBC.

Just click on the link!

Ten Things Your Friend with MBC wants you to Know

I do gets lots of comments like "You look great...' which really means "You don't look sick...'

Or lots of questions like:

"When is your next oncology appointment?
'Is your treatment working?'
'What's your prognosis?"
'When will you be done with chemo?'

This article will help you better understand that MBC is not considered curable, but treatable.  I will always be in chemo or treatment until the next best thing comes along or I'm dead.  The median lifespan of MBC is about three years after diagnosis, but there are many wild cards and exceptions! Such as where it's at, does it respond to treatment, does it continue to spread?  In my case because it's in my bones, I'm especially at risk for fractures and/or spinal compression.  I'll soon be starting on an osteoporosis medicine that's found to be helpful in strengthening bones in MBC patients like me.

Click here for Prolia commercial

I'm hopeful I'll continue to respond to the meds I'm on, and if or when I stop responding, there will be new and exciting options for me. I'm doing my best living with MBC but have been astounded to discover it is the least funded area of breast cancer research and the statistics are sobering.

An estimated 155,000-plus women (and men) in the U.S. currently live with “mets,” or metastatic breast cancer. This type of cancer, also called stage 4 breast cancer, means the cancer has metastasized, or traveled, through the bloodstream to create tumors in the liver, lungs, brain, bones and/or other parts of the body. Between 20 and 30 percent of women with early stage breast cancer go on to develop metastatic disease. While treatable, metastatic breast cancer (MBC) cannot be cured. The five-year survival rate for stage 4 breast cancer is 22 percent; median survival is three years. Annually, the disease takes 40,000 lives. 

MBC is widely misunderstood

Thanks for listening and supporting and your willingness to hold my hand through this, whether it's in person, or in your thoughts, prayers and messages.

It means a lot.

πŸ’—



 

Saturday, March 9, 2019

I See you Sister


This was me.  In the chemo chair. That first go round.  Summer of 2010.  I used to take with me what comforted me.  Oh maybe some snacks, and some tea, maybe a blankie.  I'd wear comfy clothes.  Most of the time I went by myself; Hubby was working and I had the love and support of my team when I got there. Especially my Cathy. My chemo nurse. She knew I was a girl of faith, so she'd pray over me too. My Cathy.

Well here I am, just about nine years later, cancer bitch came back.  It's in me bones now.  I am grateful though that this time chemo is in the form of pills.  I don't have to go sit in the chair anymore and get all hooked up.  I am on chemo in the comfort of my home, and although the side effects are challenging, I'm still working part time and living my life.

Yesterday was my six week oncology check up since my MBC diagnosis in November 2018.  I've had two great checkups in a row since diagnosis and starting treatment.  My CA 15-3 or tumor markers have come down significantly.  I started up at 141; the range for "normal" if you will is up to 25.  My first set of labs after starting treatment I was down to 39, and now yesterday at my appointment, it was 31.  πŸŽ‰ Tumor markers are substances in your blood when a tumor is present.  Not everyone with cancer shows these antigens or markers in their blood.  My first go round my tumor markers were within the normal range, even though I had Stage 3 breast cancer.  The CA 15-3 test is not used to diagnose cancer but is used along with other tests. Once I became metastatic, meaning my cancer had spread, I did show elevated markers.  This is often the case when it comes to metastatic breast cancer MBC. At this point, my oncologist uses the markers as an indication of how I am responding to treatment.  So far so good, but MBC is not considered curable.  I have a long road ahead, of which I'm sure there'll be many up and downs. For today I am celebrating the good that treatment is working.  When you are MBC, the goal is no longer to cure the cancer.  It's to give you as long PFS (progression free survival) as possible.

When I was there yesterday, I always have to go and hug Cathy.  It's a weird feeling to walk back into the infusion area.  Some folks are receiving their chemo in a large open room with others.  Some folks are in private rooms.  I was always lucky, they gave me a private room.  I got my hugs from Cathy and as I was leaving I saw a very young woman of color, wrapped bandana on her head, heading into one of the private rooms. I kind of hesitated as I watched her settle into the chair and get ready for her infusion.  I wanted to say something to her, I don't know, give her a hug, she's so young.

It hurt me.  It really did. I'm still thinking a lot about her today.  Did you know that statistically speaking women of color are usually diagnosed at a much later stage than caucasian women?  Did you know their overall survival rate is much lower than someone like myself?  This hurts me. It's not that I don't have great empathy for all my sisters, but these statistics are chilling.

'From 1989 to 2015, breast cancer mortality rates decreased by 39% (322,600 deaths averted) in the United States. From 2006 to 2015, all racial/ethnic groups experienced decreased breast cancer death rates. When looking closer at the data, though, it is evident that not all women benefited equally from this decline. In 2015, breast cancer death rates were 39% higher in black women than in white women.' contemporaryobgyn.net

Why is this, you ask?  These may be some of the reasons:

Black women are more likely to get triple-negative breast cancer, which is very aggressive and difficult to treat. 
Access to health care and proper preventive screening.
Lower quality care.
Knowledge of breast cancer risk factors and how to reduce them.

It just really got to me seeing her.  I guess because I know what it feels like to be in that chemo chair, and everything that goes with it: the uncertainty, the sickness, the anxiety, the financial burden, the negative effect on quality of life., all the what if's.

Romans 12:12 
Be joyful in Hope
Patient in affliction
Faithful in Prayer
  
I saw you yesterday Sister.  I wanted to hug you.  I am praying for you.  I don't know your name but I know God does.  I hope I see you again.  Keep going.

Breast Cancer Rates Among Black Women and White Women

Confronting Racial Disparities in Healthcare

Reducing Your Risk


Wednesday, February 13, 2019

On a Rainy Day

The Fairy Ring

Oh, have you seen the fairies dance
Upon a Summer's night?
And watched the gnomes and pixies prance
Whene'er the moon is bright?
'Tis splendid fun to see them run
As soon as it grows light...

Eugenie Thornton


It's been raining hard all day today.
The sky is gray and the house would be dark without lights on.
Sometimes when the world gets too big,
too scary,
too overwhelming,
I escape to the tiny places.

This was my project today,
while dreaming of summer,
pixies and gnomes,
thatched roof cottages,
woodland creeks
and shaggy moss.

Sometimes,
even when you are all grown up,
you need to play,
and find joy in a fantasy world
you create.














In your busy life,

did you find some time to play today?



Friday, February 1, 2019

Make Empathy Great Again, Part 2 of 2

So where did we leave off?  Oh yeah.  The bone biopsy.  Shiver me timbers, it's in me bones.  Aaarrrggggggghhh she says like a pirate.

I went to a large reputable East bay hospital aka John Muir to have the biopsy done.  I had considered having it done at Stanford but even the oncologist there said it would be perfectly fine to have it done locally instead of having to drive to Stanford.

I was told not to eat or drink anything for the twelve hours prior to the procedure and checked in with my Hubby.  He's my designated driver, my backup and my blankie.  Thank you Husband.  In sickness and in health.

I was shown to a hospital room and prepared for the procedure.  An IV was inserted, after a bit of wrangling over where the best spot on my arm was.  First of all, due to the risk of lymphedema*, I never get poked in my left arm.  I always use the right.  I'll admit, I'm not an easy stick. I even had an anesthesiologist tell me I'm a harder stick than a preemie.  I even once had an IV in my neck because the anesthesiologist (also John Muir) couldn't get the stick in my right arm and he was angry I wouldn't let him use my left arm. I had the puncture sites on my neck to prove it.

See all those?  Pokes in my neck from a frustrated anesthesiologist. 2011
(* What's lymphedema?  When you've had lymph nodes removed, which is often the case during a cancer surgery, it affects that area of the body trying to circulate lymph fluid.  As a result, you can get extreme swelling.  Since I had lymph nodes removed from underneath my left armpit, next to my cancerous breast, I was instructed to not use my left arm for needle sticks, blood pressure etc.)

Ok where was I?  I've learned from years now of sticks where my best spot is on my right arm.  It's not dead center at the elbow.  It's slightly to the left towards my body, it is not a convenient spot for them but it works.  I had to convince many a nurse of this.  After continuing to search for a vein in areas I told her she wouldn't find one, she finally agreed and got me in one stick to start an IV.  Folks, as a cancer patient, when somebody gets you in one stick, it's like a ticker tape parade with people cheering and confetti flying.  Most times you have to advocate for yourself though.  Some of the medical staff think they know better than you do about your own body.  It's often a battle to be heard and listened to, even by the people whose job it is to give you the best care possible.

The nurse asked me if I was in any pain.  I said 'No just psychic pain."  She didn't even laugh.  Come on Lady, work with me, I've worked hard on this material.

They finally came in to wheel my bed with me in it into the procedure room. I kissed Husband goodbye and made the trip in the bed, down halls into an elevator and then into the room.  There was quite a bit of hustle and bustle in the room.  Two nurses, two CT techs and I think some others behind a glass wall where they could view what the CT was showing.  They'd use the CT to guide the needle to get a core sample from the bone.  Oh have I mentioned yet which bone? My L1 vertebra.  I'd have to lay on my stomach and they'd take a sample from there.  With what you ask Dear Reader? A needle that's also a drill.  Gulp. Whimper whimper.  Somebunny help me!

The radiologist who would perform the procedure had not yet arrived as I was being prepped, the usual stuff they do.  Hooked up to a blood pressure machine, and electrodes everywhere to measure heart rate and stuff.  I noticed they were going to put the blood pressure cuff right next to the IV in my right arm.

'Um excuse me, I've had an IV blown before because it was put over an IV.  I have finicky veins.  Can you place it somewhere else?"

'It'll be fine,' she looked at me like 'Lady this isn't my first rodeo ok, let me do my job.'

I insisted.  She didn't listen.  She put the cuff on and started pumping it.  I could feel the pressure and the IV really hurting.  I told them emphatically.  Finally the other nurse said "OK lets move it, we can place it on her leg.'  I was relieved when they did.  I didn't feel like having to get a new IV started.  Yes I've had that happen before; see above photo that led to neck IV.

As I was laying there, in a hospital gown and hospital pants, I was starting to feel very anxious. It's really hard to do these procedures.  I don't know what's harder, when you do know what to expect or when you don't know what to expect.  I heard the two CT scan techs, both men, discussing what kit they needed; it appeared one was training the other.

I was getting nervous as I heard them discuss getting the "bone marrow kit."  Hmmm. I was puzzled. I thought I was having a bone biopsy, not bone marrow biopsy.  They continued to discuss the kit, the gauge size of the needle and so on, all things a patient does not want to hear.  I felt like a mannequin laying there on the table.  Mannequins have no feelings.  No brain.  No nothing.  I wasn't a person. I wasn't a survivor.  Nothing.

I spoke up.  'Excuse me but I'm not having a bone marrow biopsy,  I'm having a bone biopsy.'  The CT techs did not reply, seemed rather surprised I was talking to them.  The nurse came over and said "Didn't you have a bone marrow transplant?'

Now I don't curse a lot in my out loud conversations, but since my cancer ordeal I am known to curse like a drunken sailor a lot in my own head.

'An effing bone marrow transplant, am I in the right effing room?  WTF?' she says in her head.

I answered out loud.  'No I didn't, I'm a breast cancer survivor and I'm here to have a bone biopsy.'  They must have looked on the chart a little more, but still the techs hadn't really changed anything around from what I could tell.  We got the message that the radiologist was running a little late from another procedure but was coming in ten more minutes.

It was time for me to switch from the bed and onto the procedure table.  I figured once the radiologist came in I'd make sure I was in the right place having the correct procedure done. I was getting really anxious now.  I got onto the table to lay flat on my tummy.  One of the techs came over and said 'We'll try and make you comfortable, you will be awake but we'll give you lidocaine.'

'Debbie to blond brain, Debbie to blond brain, Holy shit, lidocaine, you're going to put a drilling needle in me and you think lidocaine is going to do the trick?  Mommmmyyyyyyyy. Jesuuuuuuusssss.'  In my head I started calling on all my higher powers, hoping they would forgive the language.

'In your IV we'll also give you something to make you more comfortable but you will be awake during the procedure.' Ok ok I relaxed a bit.  I got this.  I got this. YOU GOT THIS GIRL.

Everyone continued their little personal conversations and as I lay there, the other tech, who had not even introduced himself, begins to open the back of my hospital gown and tug at the back of my hospital pants.  His big hands pulled down the back of my pants to expose my upper butt, and I was startled.

It just hurt my feelings and it made me angry.  Would it have been so out of line for one of the female nurses to do this?  I mean he didn't even introduce himself to me.  I hadn't even looked at his face yet.  It was upsetting to me.  Very upsetting.

Despite my extroverted personality, I'm pretty shy and modest when it comes to having male medical staff. It makes me nervous.  I have usually always chosen female doctors.  I've had a few things happen in my childhood, teen years and even later as an adult; I just don't feel comfortable with a strange man's hands on me.  Even if he is medical staff.  My plastic surgeon at Stanford was a huge exception for me.  He instantly and every single visit made me feel so comfortable and he is extremely considerate, gentle, and very aware about being respectful with a female patient.  He was my exception.  Thank you Dr. Gordon Lee.

So as this nameless faceless tech was rubbing what I assume was betadine all over my back and buttocks area, I held back tears. Others in the room carried on chatting and he did his job.  I felt very sad and alone and scared and like I was there to get my oil changed or something.  It was so impersonal while being so personal.

I wanted to scream.  'Don't you people get what I am going through right now?  Do you understand I am a breast cancer survivor, that I spent a year in cancer camp, had countless surgeries and have been cancer free over eight years?  Don't you get that this test may reveal if my cancer has returned and has now spread? I may very likely be going from Stage 3 to Stage 4, not to mention, THERE IS NO EFFING STAGE 5?'

Look of course I don't expect to be cuddled and sang to and have a story read to me prior to a procedure like this, but I do expect empathy for my suffering, for my past history, and for what this current test may reveal.  And of course, the fear and pain of the actual test.  Can I get a little empathy here please?  A little kindess?  A little TLC? Is it too much to ask for some sensitivity from male medical staff when they are touching my body in personal places?

From this patient's perspective, this is how it should have gone.  Everyone who was present and part of the procedure should greet me by name and introduce themselves to me.  The procedure I'm there for should be discussed and confirmed.  It should be clear how much discomfort I'll have and what they plan to do about it.  How long will the procedure last?  And maybe, maybe just a little pat pat even if just on my hand as if to say 'There there now Mrs. Clay, everything is going to be ok.'

I'm a pretty tough little cookie, but that doesn't mean I'm wonder woman, that doesn't mean I don't have feelings, that doesn't mean I wasn't afraid.  I feel I could have been handled a whole lot better.

Just then the radiologist comes in, introduces himself to me then tells the tech's "You have the wrong kit. We're doing a bone biopsy today."

Enough said.
Radiologist now asks the techs to call pathology and ask how large a sample do they want.  They call and get his answer. I can hear them discussing then I hear radiologist say 'Well I plan on getting the biggest sample I can."

'DO I REALLY NEED TO HEAR ALL THIS? SHEESHUS HOW BIG A SAMPLE ARE WE TALKING ABOUT...' then I hear radiologist say "OK Mrs. Clay get ready for some pressure in your back...'

Now this ain't my first rodeo, I know when they say pressure, they really mean PAIN, and in goes the lidocaine needle in several spots towards the small of my back. I'm wondering why the drip drip drip of the IV didn't make that easier.  Now it's time for the biopsy needle otherwise known as a freakin drill.

In it goes, you got this Girl, you got this Girl. I hear myself groan loudly.  It hurt so bad.  I DON'T GOT THIS.  I DON'T GOT THIS.  I don't know if they upped my meds at that point, I don't remember a whole lot cause I was praying my guts out, repeating the Lord's prayer in my head a thousand times as I felt the needle go in deeper, lots more pressure and pain, and then I heard the drill.

god help me.  god help me.  I just can't do this shit anymore.  I just can't.  That's it folks.  I'm outta here, I just can't do this shit anymore. I wondered if God forgives major cursing during a prayer, if not, I'm really screwed.

Then it was done.  I lay there.  Like the proverbial wet noodle that just got my ass kicked.  I wanted to cry.  I think I did.  I heard the radiologist say he got as big a sample as he possibly could. I was done.  It took a bit of time to unhook me from all the electronics and BP cuff and get me back into the rolling bed.  I don't know how long it was before I was taken back to my room.

A completely different nurse came in to check on me after I was delivered.  I don't know if they were going through a shift change or what, but then another nurse came in after that one and took over.  I wanted to just crawl into my Husband's arms and have him rock me like a little baby and tell me you are a brave brave girl and I love you and you did it, it's over.

I just lay there. My back hurt.  Mostly though, my feelings were hurt. And I was angry.

If you are in the medical field and do not have a heart for service, you're in the wrong business.  If difficult procedures on patients are just regular ol duty for you and you have no empathy, you're in the wrong business.  If you are a hospital administrator and you don't provide your employees with regular empathy and sensitivity training, you are doing your patients and your staff a disservice.  If you are medical staff who is the opposite sex of your patient, please use the utmost sensitivity when handling that patient.

I just lay there.  My Husband patted me.

My back hurt like hell.

Mostly though, my feelings were hurt and I was angry.

Really hurt.

Really angry.


We're Gonna Need a Bigger Boat, Part 1 of 2

Happy Friday to you Dear Reader.  It's a gray day here in the Bay Area; another large storm coming our way tonight.  I can't complain given what I've seen in other parts of the country!  Brrrrrr.  Frozen-geddon!!!!  With all this rain we've had, especially after years of drought, my backyard lawn looks like a golf course green at Pebble Beach!

Today I thought I'd tell you about how it was discovered that I am having a recurrence and diagnosed with metastatic breast cancer.  It seemed to start revealing itself in 2018, when my tumor markers had a slight increase.  What are tumor markers you ask? When you have a history of cancer, you continue to see your oncologist on a regular schedule.  With me, it was every six months.  Prior to each appointment, I'd have to have blood work done which usually consists of the following: a CBC or complete blood count metabolic panel, tumor markers, and Vit D blood serum level.  Tumor markers are specific proteins detected in the blood that may or may not be a sign that cancer cells are present.  Some people have tumor markers.  Some people don't.  High markers don't always mean the presence of cancer.  Low markers don't always mean cancer isn't present.  Some oncologists don't use tumor markers.  Mine does.

We noticed early in 2018 my tumor markers had a slight increase. They should be no higher than 25, mine were like 31.  They had never been elevated.  My oncologist thought we should go ahead and do a PET scan.  I was against it.  I've been very cautious about over exposing myself to radiation.  No one really keeps track of your radiation exposure through and beyond cancer treatment.  I had seven weeks of high does radiation during my first trip to cancer camp.  I was very conscious going forward about not over doing it.  Some oncologists use PET scans to do surveillance for cancer.  I guess they feel the radiation risks are outweighed by the ability to detect cancer.  Some integrative or more holistic oncologists are very conservative with scans due to the radiation exposure for their patients.  According to the American Cancer Society, the average American is exposed to 3mSv (millisieverts) of radiation from natural background sources, like the sun, over the course of a year.   A regular chest X-ray is like the equivalent of 0.1 mSv or 10 days of natural background radiation exposure.  A mammogram exposes a woman to 0.4 mSv, or about the same exposure of 7 weeks of natural background exposure.  Guess how much mSv in a PET scan, which is a full body scan?  It's 25 mSv, in other words, like eight years exposure to background radiation in one procedure.  I decided I wanted to be more conservative and just keep a watchful eye.  All my other labs looked great and I was having no symptoms.  Instead of coming back in six months, she wanted to see me again in three or four.  At that next appointment, tumor markers were up again to 41.

Fast forward to this last October; I had an unexpected day off due to a power outage at the winery I work at.  (Have I mentioned I work at a gorgeous Napa Valley winery at the top of Mt. Veeder?  Yeah I'm lucky like that.)  I was on my way to work when I got the news so I turned around and went home and wondered how I'd spend the bonus day off!  Little did I know I'd spend it in agony, positive I was passing a kidney stone.  Yikes, had them about ten years ago and yes folks they are brutal.

Make a long story short, when I had a CT scan of my abdomen and pelvis to confirm kidney stones, it not only showed I had a few small stones, but I was suffering from an acute diverticulitis infection. Oy vay.  Diverticuli are small pouches that develop inside the intestines, can be age related, and are rather benign unless a small abscess forms in one.  I hit the jackpot.  I was prescribed antibiotics right away,  and knew I'd be off work for a bit to recover, and also find out what to do about the kidney stones.  That wasn't the only things though noticed on the CT.  At the very bottom of the report on the very last page it was noted that I had some "osteoblastic bone lesions" and given my prior history of breast cancer, the pathologist noted it could be consistent with metastatic disease.

My primary care Dr. hadn't even noticed or read what the bottom of the report said.  It was never discussed in my initial appointment after the CT.  The focus was diverticulitis and the kidney stones.  When I followed up with the urologist's office about my kidney stones, they seemed hesitant to see me and it was conveyed to me that I should discuss my CT with my primary care physician.  Obviously the urology office had read the full report.

My primary care physician was out of the office the day I called to get a copy of the report myself.  When I read the whole thing, I couldn't believe how the pathologist had 'buried the lead' and disappointed to say the least that my primary care physician had not read the full report.  I was in shock.  I emailed my oncologist to tell her, but since I was already due to see her later that week I knew we'd get to the bottom of this.  The possibility I could have a recurrence of breast cancer after over eight years cancer free really sucked.  Not to mention, going from Stage 3 to Stage 4 is a leap nobody nohow ever wants to make.

When I did my labs prior to seeing my oncologist, my tumor markers were now 141.  Strangely enough, my Vit D level, which I'm such a freak about keeping high, was only 16!  What the hell?  Even lower than when I was originally diagnosed in 2010!!  I had been taking 5,000 IU D3 for some years after my first diagnosis, after finding out the relationship to immune health and cancer and a whole bunch of other bad things when your D level is low.  This just made no sense.  Was the diverticulitis to blame?  Had I not been absorbing the D for some time?

My oncologist didn't try to break it to me gently.  She knows I'm a 'get to the point' kind of girl, but she was like 'It's back.' I'm sure given her experience even without biopsy confirmation she felt certain that the cancer was back and had spread to bone.  (She was right.) I was trying to stay hopeful. Maybe these lesions are just old-lady-itis; I was turning 60 ya know and I had read sometimes bone lesions are benign.

I was scheduled for a PET scan, which is a full body scan where a special dye with radioactive tracers is injected into you, usually with an IV.  You're placed inside a scanner and theoretically if there is metabolic cancer activity, you should light up in the spots where cancer is present.

Say hello to my little friend.
At least now I would have definitive answers.  So what did my PET scan show?  All the same spots as already seen on the CT scan, but nothing lit up. Thankfully no spots showed up on any organs but  what the heck?  Why didn't I light up?  I've since found out that my particular cancer, invasive lobular carcinoma, often doesn't light up on a PET scan.  Looking back, I didn't light up my first PET scan either, when I had a 5 cm tumor in my left breast.  That bitch should have lit up like a bright star in a dark sky but nope.

On the PET scan the pathologist noted the same 'diffuse' bone lesions but once again reported no conclusive evidence of metastatic disease.  At this point the only choice was to biopsy one of the bone spots to conclusively determine if the cancer was back and spread, and/or a brand new cancer.  All of this was going on during Thanksgiving, which was also my 60th birthday.  I decided not to tell my sons or immediate family until I had a definitive answer.  FYI they all later scolded me for keeping it from them, even if I didn't have answers.

'Mom weren't not kids like we were on your first go round.  Promise us going forward you'll always tell us what's going on, even if you're on a wild goose chase.' I promised.

I decided to send an email to my plastic surgeon at Stanford who did my reconstruction, telling him of these events.  He suggested I set up an appointment at the Stanford Women's Cancer Center for a second opinion, and his office set up the whole thing for me.  I met with an oncologist there, and she also concurred a bone biopsy was absolutely necessary.  'Let's make sure what we're treating here.'

I did my best to prepare myself for the bone biopsy.  I've had several surgeries, glitches and all kinds of procedures; cancer ain't for sissies folks.  I've had a chest port cut and ripped out without anesthesia.  I've had to pack opening surgical wounds like a civil war soldier.  I've had my boobs scooped out and my tummy cut end to end to make new boobies out of my muffin top.  I mean, come on!

How bad could a bone biopsy be????


Friday, January 18, 2019

Welcome to Club Met: Metastatic Breast Cancer


So you may have heard by now, after eight and a half years cancer free, I'm back in the game.  My newest joke is 'I've always wanted to go to Club Med, not Club Met.'  WTH? But seriously folks, is it too early to say cancer freaking sucks.

Club Med be like:


Club Met be like:
My refrigerator is GE too 😜

As a reminder, or for those of you who are newbies to my blog, here's some background for you. Just an FYI, not all the photos and videos and such are visible on your mobile device.  Sometimes you need to read on your computer, or go to my blog's FB page @thesacredordinary

I was diagnosed with Stage 3 lobular carcinoma in April of 2010, previously undetected by mammograms.  I had five months of da good shit, neoadjuvant chemo (chemo before surgery).  I affectionately refer to that summer as Cancer Camp, where we make cool crafts out of the hair we are losing and prepare ourselves for the journey to the Kingdom of Lost Breasts.




In October of that year, I had a bilateral (or double) mastectomy.  I named my girls Flopsy and Mopsy, and even though cancer was only found in Flopsy, I decided these two had gone everywhere else together, so they were going to the Kingdom too.  I was supposed to have reconstruction surgery at the same time as the mastectomy, but as luck would have it, my original plastic surgeon was expecting twins and was put on bed rest two weeks prior to my surgery.  It was over four years later that I had reconstruction, and although I had several healing issues, I was blessed to find a new plastic surgeon and received excellent care and new boobies at Stanford.  I didn't get implants; my new boobs were made out of my own tummy skin and fat! Winning!

Last time I was this flat was 5th grade.

I hated these but they did fill out my shirt and made me look like my old self.
Getting my tissue expanders filled, stretching skin for new boobs.
I'm getting ahead of myself here!  A couple months after recovering from the bilateral, I had seven weeks of radiation.  I got street cred folks, having been through the cancer treatment tri-fecta!  

Poison, cut and burn baby burn.



Radiation burns under my left arm and lymph node area
Fast forward eight years later.  Oh how grateful I was to have that bitch behind me!  Oh what I would have missed if cancer had its way with me in those early days.  My sons were only 19 and 12 at the time.  In the years since I was blessed to see the oldest graduate with a cinema degree, and have his senior thesis film presented at the Sacramento International Film Festival.  I was blessed to see him continue touring and performing and aging out of the World Champion Concord Blue Devils drum and bugle corp.  I was thrilled when right out of college, he was hired at Sony Playstation!

I was blessed to see my youngest son as the Drum Major for his high school during his Senior year, and was right there at his high school graduation.  I was proud to see him perform a year as a Blue Devil percussionist; he still teaches percussion at his former High School and Middle School. He is a paid audio book voice over actor, and has his own live stream on Twitch.tv, where people come to watch him play video games and listen to his awesome hilarious commentary.  He's finishing up at community college and has applications in and waiting to hear!

Oh what I would have missed if cancer had its way with me back in 2010!  I remember in the early days of my diagnosis the typical "why me God why me..." Now though, looking back at all the love and support and angels that arrived, I wouldn't give it back. Cray cray I know but that's my testimony.

I ain't gonna lie, finding out the cancer was back was a big blow, damn, but I am faithful that God will use this test to once again write my new testimony of His faithfulness.  After my initial diagnosis, I started this blog.  I blogged daily all through treatment, had many followers all over the world, and came to know my 'Sisters' (and a couple Brothers) in the trenches.  Many of whom I've kept in touch with over these years.  Well, I'm back here at the keyboard again, I guess there is more for me to say and learn and educate about living with cancer.  God has more for me to do.  They always say God will never give you more than you can handle so evidently he thinks I'm a boss!

Frequently Asked Questions:

Does Stage 4 cancer mean I've received a terminal diagnosis.   I'd like to start with what exactly does Stage 4 mean?  Well, there ain't no stage 5 folks.  Where is the dang suffering emoji on blogger... Oh here it is 😩 Just today when chatting with my nephew again about everything, he was commenting how it really is sobering.  I told him 'Thank goodness I work at a winery!' 🍷 We laughed hard. That's one of the things I learned in my first go round in cancer camp.  You have to LAUGH louder than the CRYING.  If you are a sensitive type, be prepared, these posts will be filled with some dark morbid raw humor, cause that's one of the ways I get through this shit.  Laughing in the face of cancer! Take that you ruthless Bitch!  Ok rant over, where was I...

Stage 4 breast cancer, aka metastatic or secondary cancer, is when the cancer has spread from it's original location to distant places in the body.  Some people are diagnosed right out of the gate with late stage cancer.  When I was diagnosed it was with a fairly rare form of breast cancer, invasive lobular carcinoma.  Only makes up about 10% of breast cancer cases.  I was hormone receptor positive, and Her2 negative.  What does that mean?  It basically means that my breast cancer can use estrogen as fuel.  I was considered Stage 3B because I had a fairly large tumor, and it had spread to a few of the lymph nodes on the same side. After treatment, I was considered "cancer free." After five years, I really considered myself a "survivor." Go Jesus!

Now a days I consider myself a breast cancer warrior.  In fact I'll be posting about why I think the 5 year milestone needs to be abandoned in my type of cancer.  I'm fighting it again, it's in my bones.  In another post, I'll explain a little more about how it was detected. This post I'm just going to focus on helping you understand what Stage 4 means and how I'm coping with that. After my original diagnosis, the treatment was aimed at hopefully providing a "cure." This time around, the treatment is aimed at delaying disease progression as long as possible.  Doesn't take much to connect the dots to understand what I'm facing here.  There is a likely possibility that this will eventually be the cause of my death.

This is how I choose to look at it.  This is very important dear Reader so lean in.  The truth is we are all Stage 4.  Let me say that again.  We are all Stage 4.  Ain't nobody getting out of here alive.  There are plenty of folks, through the random and chaotic nature of this life, who will die before me.  I've always known I will die, it just may be a lot sooner than what I was planning on. As my Pastor often says 'Nothing is promised to any of us' and 'Life is full of swift transition.' I plan on riding this thing called my sacred ordinary life until the wheels come off, the engine is smoking, and I head over the cliff, straight into the arms of my Savior Jesus Christ, and all the folks I love who are already there waiting for me.  The truth is we are all Stage 4 in this earthly life.  Some of us though know where we are going after.  I plan on carpe-ing the hell out of every diem, but I also know each new day brings me closer to seeing the ones I've loved and lost and miss terribly.  Some of my favoritest people are in Heaven.

What is the overall survival rate of metastatic breast cancer that has spread to bone?  Well from what I can tell worse case scenario is about two years, best case scenario I'm going for is COMPLETE REMISSION. I'm claiming it, get behind me Satan, and until God notifies me otherwise.

Will I be in "chemo" again"?  Yup, already back in cancer camp.  This time though I don't have a port and not receiving chemo infusions.  This latest greatest I'm on is in pill form.  For my particular type of cancer, which I'll discuss more in a later post, I'm on an aromatase inhibitor or AI (drug name exemestane) and another drug called Ibrance.  The AI is basically an estrogen blocker, so that hopefully my cancer his little sources of fuel.  Ibrance is a fairly brand new breast cancer fighter, approved by the FDA in March 2017.  You may have seen the commercials for Ibrance and Verzenio; both are FDA approved drugs for metastatic hormone positive breast cancer.  Ibrance is a targeted therapy used in conjunction with the AI.  It's known as a CDK 4/6 inhibitor.  What does that mean?  Basically it affects the cycle of cell growth.  The good news is it can help slow the progression of cancer, but it also has serious side effects on all my good cells too.  Yikes.





How long will I be on these drugs or in chemo?  Until something new comes along, or I die.

What are the common side effects with these drugs?  For the AI exemestane, common side effects are: hot flashes, headache, hair loss, joint/bone/muscle pain, tiredness, anxiety, nausea, dizziness, depression, insomnia.  Yay!

For Ibrance, common side effects are:  low white blood cell counts which can lead to serious infections and even death.  Low red blood cell counts and low platelets.  Common side effects from Ibrance are infections, tiredness, nausea, sore mouth, abnormalities in liver blood tests, diarrhea, hair thinning or hair loss, vomiting, rash, and loss of appetite. Oh goody!

Are you going to lose all your hair again like you did the first time? I'm hoping to just have some mild hair loss or thinning.  Two weeks in, I've already noticed a little more than usual on my hairbrush, but so far nothing alarming.

Summer of 2010, Deb 1 Cancer 0

Are you scared?  Don't get me wrong, cancer sucks, and I'm not happy to be here again, with the stakes even higher.  Despite all that, I feel remarkably peaceful and happy.  It's still rather shocking to be labeled Stage 4, but I am a very blessed lucky girl, and my faith received a huge booster shot after my last cancer battle.  I was in a very good place when I received this secondary diagnosis: my husband and kids doing well, a new job for me, escaping server life and loving the winery life.

Are you still working? I took a couple months off work as I was going through the gauntlet of tests to get to diagnosis, including a bit of time to process/accept the news, and start the new drugs.  I am recently back to work and hoping to continue part time as long as I can.  I love my new job I've been at since last Spring.  It's just awesome, great bosses and coworkers, and come on, working at a winery in the beautiful Napa Valley?  Lucky girl!  Dat's me!

Hosting a wine and cheese pairing with winery tour at my job.   
Was breast cancer in your family? Your Mom died of cancer, right? No history of breast cancer in my family.  Did you know that only 5-10% of breast cancer is genetic?  That means at least 80-90% of us get diagnosed with no family history.  My Mom died from cancer at only 46 years old.  My Mama though died of renal cell or kidney cancer.  Although she never smoked, she was a musician during a time when smoky clubs and bars were normal.  Most likely my Mother's cancer was second hand smoke related.

Mommy and me on my wedding day, 10/25/86

Well my Dear Reader, there is lots more to tell you in these coming days and months, and I will be posting not only about treatment, but also taking you along as a witness to all the good I know is coming for me!  I hope you'll join me, comment, ask questions, and of course, prayers and love and good mojo are needed and welcome.  To my beloved Sisters who I met through this blog on the last go round, it is really hard telling you this news.  I know when one of us goes down, it really hurts all of us.  There there now Sis, I got you, I know you got me.

Here is the world.
Beautiful and terrible things will happen.
Don't be afraid.  Frederick Buchner

I promise in this Flopsy and Mopsy the Sequel, I will tell you about the beautiful things too.  They are still happening for me every day.

I am not afraid.
I am blessed.
I am grateful.
I am one tough cookie.
Jesus at the wheel.

Writergirldreams.

That's me.


Vallejo Relay for Life, Hero of Hope 2012

If you have a question, comment here, or you can find me on Twitter @Writergirldrmz or my blog page on FB @thesacredordinary


Saturday, January 5, 2019

Faith

Can you see it? Nestled in the sticks and the mud and then, there it is. Sometimes hard to find. Sometimes you must close your eyes to see it. Faith. Faith. On a walk with my son over eight years ago I made this little sign for myself, as he played on a tree swing tied to a tower of eucalyptus. I was in cancer camp at the time, and needed a reminder that I am the daughter of a King. That I am loved and favored. That He would pull me up out of the muck and the mire and plant my feet on solid rock.

It’s been almost nine years since I battled Stage 3 breast cancer but oh the legion of angels He sent me. Oh the blessings that rained on my life. In the early days of my diagnosis I cried out ‘why me Lord why me...’ Looking back now, I would not give it back. In my sickest darkest days faith was renewed, a marriage restored, strength and peace found in surrender to His Word and mercy. On this last day of this year, I am picking up my sword again, straightening my crown, gearing up for battle, and keeping my eyes on the hills from where my help will come. I’m part of a new and privileged club now; evidently just being a VIP member of the Sisterhood of Cancerous Breasts was not enough.

 There is more for me to do and say and learn and educate, as I’ve been recently diagnosed with metastatic breast cancer aka Stage 4. ‘It’s in me bones’ she says ‘aaaargh’ like a Pirate. There ain’t no Stage 5 folks so I’ll be picking up my pen again, blogging again on this new journey, telling you about my sacred ordinary wherever it takes me. I always wanted to go to Club Med, not Club Met! Come with me dear Reader. I’ll need your company. And love. And prayers. Saying goodbye to 2018. Let’s do this 2019. I’m ready. Writergirldreams. That’s me.


 #breastcancersucks #jesusheals #metastaticbreastcancer #clubmet #mbc #thesacredordinary #blogger #faith #invasivelobularcarcinoma #lobmob #jesusatthewheel #breastcancerwarrior


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