Monday, June 21, 2021

Light of the World and plumeria love


They were everywhere. Blanketed the ground like a perfumed petal path for a Hawaiian bride. While in Maui, I was the bride, marrying the orange sunset and the sugary sand and the aquamarine salty waters and the luminescent light.

In 2010 I was diagnosed with stage3 breast cancer and survived a year of cancer camp where a Good Witch and her coven poisoned me, cut me and lit me up like the Northern lights. I traveled to the Kingdom of Lost Breasts and came back without mine, and yet still me. 

For eight years after I thought I lost that cruel bitch πŸ’ƒπŸ’ƒπŸ’ƒ but she came back angry seeking revenge. I am Stage4 now and there ain’t no Stage5 folks. By God’s grace, the love of many poured out on me, the silent prayers whispering my name, the demon hasn’t stopped me from living my wild sacred ordinary glorious life. And even, even if I receive my cure in Heaven, earthly body game over, when I die and rise, cancer dies and turns to dust.

I don’t know what battles you face my dear Listener, the heartbreak you barely breathe through, but I just came to say ‘There there now, don’t stop collecting the plumeria, making memories, breathing in the sweetness of your life. Keep going. Silver linings, angels on your path, and serving others in simple kind ways will continue to give purpose and meaning to your life. Keep going. There is a Light no darkness can overcome. Lord I receive it, and share the Good News of Your faithfulness.’

#plumeria #maui #metastaticbreastcancer #stage4breastcancer #canceraintthebossofme #jesuslives #findingpurposeinpain #lordhearmyprayer #comfortyourpeople #keepgoing #thereisalight #nodarknesscanovercome #jesus #thealphaandomega #comeallwhoareweary #allarewelcomeatthetable

"... We are not meant to be seen as God's perfect, bright-shining examples, but to be seen as the everyday essence of ordinary life exhibiting the miracle of His grace. ..." Oswald Chambers (thank you Rick Stilwell) 

Wednesday, April 21, 2021

Paying it Forward: Relay for Life

Seems only fitting that on this day, April 21st, the anniversary of my diagnosis with breast cancer, that I launch my 2021 Relay for Life goal. 11 years ago today, I was diagnosed with Stage3 ILC or invasive lobular carcinoma, a hormone positive breast cancer. Back then I spent over a year in cancer camp. Five months of chemo infusions prior to surgery to give cancer a swift kick where it hurts. It did shrink the 5cm tumor in my left breast down to less than 1. My reward for graduating chemo was surgery to remove my breasts. Although there was no cancer in my right breast, I chose a double or bilateral mastectomy. I figured my girls had always gone everywhere together; Flopsy and Mopsy would go to the Kingdom of Lost Breasts together too. After recovering from surgery I had seven weeks of radiation, earning the title ‘Glow Girl.’ A few years later came ‘Flopsy and Mopsy the Sequel’ with reconstructive surgery, making new boobies with my own tummy skin and fat. Cancer camp is filled with losses and lessons, glitches and gore. It clears your calendar, becomes a full time job while depleting your bank account, and demands ninja warrior endurance. You have many decisions to make, but only two choices when it comes to the diagnosis and treatment: will it break you or make you? I do my best to turn this test into my testimony. My blessings still far outweigh my troubles.

It was joyful to have eight years of what I thought was ‘cancer free’ only to find out in late 2018 the original breast cancer had spread (metastasized) to my bones. I was stable on meds for almost another two years, until finding out that treatment had failed. The cancer had spread to my stomach lining and colon. I’ve been on a new line of treatment since Fall of 2020 that appears to be working. Any way you look at it, given the median survival for metastatic breast cancer is 3 years, I’m blessed to still be here, despite the challenges and heartache in what is considered a terminal diagnosis. There is no cure for metastatic breast cancer, only a series of challenging treatments to try and slow progression as long as they can. When one fails, they try another and so on. I will be on some form of chemo the rest of my life.

I’ve Relayed since that first summer of 2010 in chemo, for myself and all those families affected by the heartbreak of cancer. I lost my Mom Nancy to kidney cancer; she was only 46. A lifelong musician playing in clubs and bars, her cancer was most likely a result of continued exposure to second hand smoke despite being a non-smoker. There have been so many others whose loss from cancer was so painful, including my son’s high school sweetheart Cara, my beloved high school teacher Gabe Escalera, and countless ‘Sisters’ and dear friends like Mother Harriet Lewis. 

I’ve got a whole new reason to Relay this year, as two close family members were diagnosed with cancer; one with breast cancer, the other with prostate cancer. Thankfully for each it was caught early and their individual prognoses are good. It is heartbreaking that cancer continues to affect my family; I pray a legion of angels and blessings will arrive for each of them, just as they did for me. 

I know there are many worthwhile charities you can support; this one is very personal to me for the help I received. It’s why I continue to pay it forward with your help. My goal this year is to raise $2,021 for the American Cancer Society. Please help if you can. I’m a witness to the invaluable research, patient support and education, patient services and housing, ACS provides and Relay helps fund. The 24hr hotline at 1-800-227-2345 is always there to offer support and help to anyone in need.

Thank you for all those who have supported me in Relay year after year, these eleven years! Thank you for your continued love and prayers and support for me and my family. It means so much and is deeply appreciated.

Thank you. 

Click here to donate to my Relay goal

Friday, January 8, 2021

Xeloda Chronicles Continue

My tumor markers now, down from 225.

Anybody need some good news today?  4th cycle of chemo Xeloda. Swipe to see how my tumor markers are dropping! Not  all cancer  or it’s progression shows up in tumor markers, but mine does. The blood test is called a CA 15-3, which detects breast cancer proteins in the blood. It’s just one of the tools oncologists use for surveillance and if treatment is working. Praise God that after a succession of other treatments have failed, this new one appears to be working! Thank you NEXT!! I am overflowing with gratitude for all the love and support and prayers lifting me up. Stage4 metastatic breast cancer is not for the faint hearted. It’s daunting to keep your chin and your faith up when faced with what is statistically a  terminal diagnosis.  Evidently God still has plans for me! I am so grateful for every new day to live and love and be present among you. Praise God for His mercies and my sacred ordinary life.

 #stage4breastcancer #metastaticbreastcancer #mbc #tumormarkers #goodnews #cancercamp #xelodadiaries #godstillanswersprayers #praisebreak #jesusatthewheel  #cancersucks #lifeisstillgood #countyourblessings #dothemath

Sunday, December 13, 2020

Xeloda Chronicles; It’s Working!

Holy Jesus Joseph and Mary!! And St. Raphael too!! This is what it looks like when your Oncologist messages you on a Sunday saying ‘yay yay yay’ that your tumor markers* have dropped again!!! Big time!!! Started at 225, then down to 174, and now 89!!!!!! 8Freaking9!!!! Wheeeeee!! Yippeeeeee!!! Merry Christmas to me!!!!! It’s not just this chemo Xeloda, it’s your love and support and prayers for me!!! Wheeeeee!! If the skin weren’t peeling off my feet from chemo, I’d be dancing in the streets!! It’s worth it!! Wheeeee!!! I feel like George Bailey in ‘It’s a Wonderful Life!!’ ‘I want to live again, please God let me live again’ and God answers his prayer! If you see a crazy blond chemo menopausal brain doing a Baptist praise dance on the streets of Vallejo, it’s me, it’s me Oh Lord!!!

#tumormarkerstilldropping #ca15-3 #metatasticbreastcancer #stage4breastcancer #mbc #mychristmasblessing #answeredprayer #xelodadiaries #sideeffects #itsworthit #thankyoujesus #happydance

Beginning of first cycle:

After first cycle down 51 points! 

After 2nd cycle and lower dose no less, down 85 points!! 

Wheeeee!! Merry Christmas!!

Isiah 9:6. And he will be called: Wonderful Counselor, Mighty God, Everlasting Father, Prince of Peace.

*What is a tumor marker? The blood test called CA 15-3 is used to detect cancer antigens, most notably breast cancer cells. Not everyone shows tumor markers, but they’ve always been a reflection for me of how treatment is working or not.

Tuesday, November 24, 2020

Mama’s Day Out

Can’t sleep. Too happy. Reliving this day. My birthday. Got out of the house. Was able to wear shoes. Was able to walk. Ate on a blocked off SF street turned into outdoor dining. Hello salt and pepper crab. Come to Mama.  Wandered through a favorite space. Victorian architecture in all its century old splendor. What a grand old lady she is! Water flowed. Orchids bloomed. Lily pads danced. Eden. Peace peace peace found here.  I keep reliving the sights and tastes and smells and sounds, etching it into my blond brain like hieroglyphs to tell the story of this day. Today we did not let the uncertainty of our future stop us.

There was no could have,

should have,

would have.

Let the record show,


we lived!

#happybirthdaydeardebbie #sfconservatoryofflowers #goldencrabhouse #family #memoriesmade #nottodaycancer #cancerschmancer #livinmylifelikeitsgolden

Friday, November 20, 2020

Happy Birthday to me!

Heading into my bday weekend and season of Thanksgiving with awesome news today! After only one cycle on the new chemo treatment, my blood work showed it’s working! My tumor markers dropped 50 points! Let me say that again! 50 points! In cancer world THAT’S HUGE folks! Now the goal is to experiment with a lower dose that will still be effective but easier to tolerate. This is common with Xeloda; finding the balance between a dosage that works and quality of life! 

Since my recurrence two years ago, I think it was the happiest I’ve seen my Onc at an appt! There are lots of options for treatment, usually going from bad to worse. Sure feels good knowing this suffering of side effects has not been in vain! 

And I finally gave in and agreed to a handicap placard.  Onc asked me if I wanted a permanent or temporary. I’m like ‘You know me, I’m an optimist, let’s do a temporary.’ 🀣

Today was a gift and despite the challenges of these side effects, I am feeling ENCOURAGED! This is a marathon folks, not a sprint, but today just in time for my bday Deb 1, cancer ZIP! Yay!! Halleluyer!! Let the church say AMEN! Every day, even the worst days, I still find something to be thankful for. So once again, thank you family and friends and followers, your prayers and good juju continue to make all the difference for me! Happy Birthday to me! Every birthday, every new day, every breath, a victory! Thank you Jesus!

 #goodnews #rightontime #happybirthdaytome #xeloda #treatmentisworking #metastaticbreastcancer #stage4cancer #mbc #oncologyappointment #jesusatthewheel #imridingshotgun #praisebreak #thankfulgratefulblessed


Friday, November 13, 2020

These boots aren’t made for walking

Now if you get this title’s play on words, you’re a baby boomer like me!

Well after several days of hellish HFS (hand foot syndrome) side effects from my new treatment, I raised my hand and sent a message to Onc. As the day wore on, I decided to follow up the message with a phone call. One thing I’ve learned over these ten years since my initial diagnosis, you have to be your own advocate! Ask for what you need! Don’t brave soldier it. Follow up! Be a pest if you have to! I’m still learning!

My Onc office did get back to me and agreed I could lower my Xeloda dose, from 4000mg per day down to 3000mg. It took a couple days for the new lower dose to help, but it finally did. Although it continues to be challenging, it is tolerable. 

I’d like to give a shout out and a whoop whoop to my Hubby; it is not easy being a caregiver and witness to your partner’s pain, grief and  difficulties during cancer and treatment. After my shower breakdown and some cuddling reassurance, he got on his phone to find something to cool my feet down! 

These booties are a game changer for me!! Thank you Husband!! He had to search for a store that had them in stock and found one pair left at a local CVS store. The booties go into the freezer, and contain gel packs in the lining that cover the sole and heel of your foot. I slipped them on and it was amazing!! I almost thought steam would rise from my hot hot feet and fog up the family room. The booties need about two hours in the freezer before use, so that same night Hubby called around and went out again after finding another CVS that still had one in stock. That way I’d always have a backup! 

Sometimes love isn't roses or big gestures. Sometimes it’s profoundly kind and simple, like a Husband just trying to find a way to cool his wife’s burning feet. 

Overall folks I am doing considerably better. Walking is still tenuous, and I’m using the freezing booties often, but I am not in the overwhelming pain I was in. I have a few more days left on this first cycle, and then have a week off before starting cycle 2. Can’t wait for my off week and sure hope it’s a bit of a reprieve before getting back up on the pony. 

Giddy up! Onward!

Stinkinpinktink! That’s me!


Here’s some info on why Xeloda is one of the drugs that causes HFS, and helpful remedies for dealing with it.


Some cancer drugs affect the growth of skin cells or small blood vessels in the hands and feet. This causes hand-foot syndrome. Once a drug is out of the blood vessels, it damages the surrounding tissues. This causes symptoms that range from redness and swelling to problems walking.

If you notice early signs of hand-foot syndrome, or if you notice your symptoms worsening, call your doctor’s office. Your health care team may need to change your treatment or help you manage the symptom. The following tips may help:

  • Limit the use of hot water on your hands and feet when washing dishes or bathing.

  • Take cool showers or baths. Carefully pat your skin dry after washing or bathing.

  • Cool your hands and feet. Use ice packs, cool running water, or a wet towel for 15 to 20 minutes at a time. Avoid applying ice directly to the skin.

  • Avoid sources of heat, including saunas, sitting in the sun, or sitting in front of a sunny window.

  • Avoid activities that cause force or rubbing on the hands or feet during the first 6 weeks of treatment. This includes jogging, aerobics, and racquet sports.

  • Avoid contact with harsh chemicals used in laundry detergents or household cleaning products.

  • Avoid using rubber or vinyl gloves without a liner to clean with hot water. Rubber traps heat and sweat against your skin. Try using white cotton gloves underneath rubber gloves.

  • Avoid using tools or household items that require you to press your hand against a hard surface. Examples include garden tools, knives, and screwdrivers.

  • Gently apply skin care creams to keep your hands moist. Avoid rubbing or massaging lotion into your hands and feet. This type of movement can create friction.

  • Wear loose fitting, well-ventilated shoes and clothes so air can move freely against your skin.

  • Try not to walk barefoot. Use soft slippers and thick socks to reduce friction on your feet.

  • Consider visiting a podiatrist to remove any thick calluses and thick nails before you begin cancer treatment. A podiatrist is a doctor who specializes in conditions of the feet. He or she can also recommend products that lower friction and put less pressure on the feet.

Xeloda Chronicles

Well, it started out easy enough. 4 pills twice a day. Way better than the chemo chair. Three days in I woke to my feet on fire and beet red. I was sure I must have set my bed on fire but no. The dreaded HFS. Hand foot syndrome. Fairly common with Xeloda. 

Got in the shower to cool my sizzling feet and then it hit me. The psychic pain. All the other memories during my journey through hell aka cancer camp. I was bawling. Holding on to the towel bar inside the shower. Cooling the inferno coming from my feet as my brain decided to show me highlights of some of the brutal moments of cancer camp. That time my port was voluntarily coming out of my chest and was cut out in the surgeon’s office. Didn’t even get a shot of whiskey or a bullet to clench when he did. That time the incisions of my breast reconstruction started to open up and they stuffed those deep wounds like I was a Civil War soldier. That time I was in so much pain stuffing those wounds myself, my oldest son had to talk to my plastic surgeon’s office because I literally could not speak. That time a cocky insensitive impatient anesthesiologist couldn’t find a vein to start an IV so he went in my neck, which took several tries. Waking up after my double mastectomy to a chest as flat as a plank, where two fat boobies used to be. A biopsy taken from my L1 vertebra with a drill, while I was awake, and not given enough IV pain meds.

That morning in the shower, it all came back to me, and I just had to cry. Not about all the uncertainty that lay ahead, because that could have flooded the house. No. I just had to give myself a moment to grieve and comfort myself recalling the horrors and glitches and pain and losses of this ten years enduring cancer camp. 

There there now. Cry. Have a good good cry Girl. This is hard hard shit and you’ve been a damn trooper through it all. There there now.

I watched as the cold water rinsing my feet and the hot tears dropping off my face went down the drain together. I did my best to keep hope from going with them.

Monday, November 2, 2020

Hola Xeloda

Cancer camp, at home chemo

Chemo poison lookin cheerful cause that's how I roll.

Magical Unicorn glitter is part of my arsenal.

In cancer camp, a puppy and a Bible are essential.

Hello Dear Reader. Thank you for coming! First off I'd like to start with a little more education about metastatic breast cancer.  For any of you who might be new to my blog, here's a quick recap about my journey in cancer camp.

I was originally diagnosed in April 2010 with invasive lobular carcinoma (aka ILC), which is breast cancer found in the lobules of the breast.  It's not as common as another form of breast cancer, called ductal.  Although I had mammograms, my breast cancer went undetected until I noticed an unusual dimpling in my breast. I talked to my primary care doctor, and she ordered my annual mammogram early, along with an ultrasound. The ultrasound showed what appeared to be a tumor, but lobular is tricky, it often appears more like a web than a solid tumor.  Long story short I was diagnosed with Stage 3 ILC, meaning the cancer was found in the left breast and a few lymph nodes on that side.  I went through a year of cancer camp which included five months of chemo, a bilateral or double mastectomy, 7 weeks of radiation, and eventually reconstruction.  My new fake boobies, or 'foobies' as we call them in the bizness, were made with my own tummy fat and skin.  It's called a DIEP procedure.  I do not have implants.  Just Flopsy and Mopsy (what I named my boobies) THE SEQUEL.

Almost eight years later, that bitch came back, or should I say, was now able to be seen on a scan.  It had spread to several spots in my bones.  That's the tricky thing about lobular, it can be present and yet microscopic, it can return or be visible years later, and it doesn't always light up a scan.  So now I am considered Stage 4.  There are lots of misconceptions about Stage 4 or metastatic breast cancer, so let's clear a few of them up.

Metastatic breast cancer aka MBC is considered advanced and is regarded as terminal. There is no cure for it, and treatment is all about prolonging your life and slowing progression of the disease. The median survival after an MBC diagnosis is about three years, but obviously there are outliers who have been living with MBC for far longer! I plan on being one of those! One of the things you have to wrap your head around with this type of diagnosis is to completely change your thinking about what your future looks like. You have to roll with the punches because you likely will face several lines of treatment to slow down progression of the disease.  A treatment regimen may work for a period of time, and then without explanation, stops working.  I’m not a pessimistic person, but there is a sad reality to having what is considered a terminal illness.  So as the saying goes you ‘hope for the best, and prepare for the worst!’

Very recent scans showed I was stable with bone mets, but a colonoscopy and endoscopy revealed another story. Biopsies from my esophagus into my stomach and also within my colon revealed the breast cancer is also present there.  That’s the tricky thing about my specific type of breast cancer, invasive lobular carcinoma. She’s a tricky ass bitch, often recurring decades after original diagnosis, and doesn’t always light up on a scan.  It was extremely disappointing to believe my treatment was working, scans were affirming it, only to find out my breast cancer had progressed again.

So after almost two years considered 'stable' with bone metastasis or bone mets (breast cancer spots on my bones) I’ve had progression.  Again.  Buckle up Buttercup, it’s on to the next line of treatment. I was on an aromatase inhibitor (estrogen blocker) called Exemestane, and a CDK-4 inhibitor (cancer cell cycle interrupter) called Ibrance. Thank you drugs for giving me time without progression, and I forgive you that you stopped working, although my medical debt will continue long after! Financial hardship and overwhelming medical debt during and after cancer treatment is a whole 'nother' blog post!

The next line of treatment for me is a drug called Xeloda (Capecitabine). It’s been around for years, and helps slow progression of both metastatic breast cancer and is also used for colon cancer.  I’m grateful I can take this chemo drug at home, and don’t have to go to the Cancer Center for infusions, which would include getting a port placed back in my chest and the good 'ol chemo chair. The side effects associated with Xeloda are varied and nasty; of course it’s different for each patient. These are the common ones, courtesy of

Xeloda is in an inactive form when you take it. Your liver, and then enzymes in the cancer cells, convert it to its active cancer-fighting form, 5-fluorouracil. (Cancer cells contain high levels of an enzyme that converts Xeloda to its active state.) This two-step activation process means that a higher concentration of the medicine ends up in the cancer tissue, rather than in healthy tissue.'

Side effects:

In addition to the Xeloda I've been prescribed an anti nausea medicine called Zofran, and it was recommended I pick up some over the counter diarrhea medicine as well.  So I'm ready to roll!  Lets do this! Gulp.  Xeloda is taken on a cycle of 14 days on, 4 pills, twice a day, and then 7 days off.  I just started my first cycle, and will let you know how it goes.  My oncologist has started me off on the recommended dose which is rather high, 2,000mg morning and night, but adjustments can be made after we see how I tolerate it.  Some of my Stage 4 peeps are on a lower dose, and some are even on a 7 days on 7 days off cycle.

Oh just one more very important thing... According to Metavivor, even though metastatic breast cancer is the only breast cancer that kills, it only receives about 5% of the funding raised by all the popular breast cancer funding organizations.  Not to mention all the marketing campaigns during October for breast cancer awareness month, or as I call it 'Pinktober.' According to Metavivor "the primary focus for the majority of breast cancer organizations is on prevention, which does nothing to help those already diagnosed, and early detection, which does not impact those living with this terminal diagnosis."

So as you can imagine, it's very important who you give your charitable dollars to in the fight against breast cancer.  Metavivor is the only organization that solely funds for metastatic breast cancer.  Early detection just isn't enough, especially when 30% of those diagnosed at an early stage of breast cancer still go on to MBC, the only breast cancer that kills.  We be dyin out here!  Pink ribbons don't cure cancer, neither does merchandise.  We need dollars donated specifically to researching MBC.  If you'd like to read more about it and even make a donation, here's a link. Donate here for Metavivor.

In the meantime, thank you for listening, and all the support, love and prayers I continue to receive. It makes all the difference.  Keep those prayers and good juju for me coming, and for my family too.  It is very challenging to love someone who is going through this!

Love and peace and health,

Writergirldreams. That’s me.

"Laugh louder than the crying!"

My family.
I made Hubby move over, he was
blocking Baby DoughDa.
One House Bakery

Tuesday, October 20, 2020

How it started. How it’s going.

How it started.

How it’s going.

My anniversary is coming this weekend. Our oldest son’s birthday is also the same day. I always forget how many eons I’ve been married but I never forget how old Adam is, so... I take Adam’s age plus 4! πŸ€£πŸ˜‰ Since finding out Stage4 breast cancer has progressed again, I’ve been up and down and all around in cancer town.

Oh the joy of this family.

Oh the melancholy and heartache. Any kind of way though,

when I do the math,

I am

have been

continue to be

so blessed.

Cancer schmancer.

Love endures.

#howitstartedchallenge #howitstartedhowitsgoing #allbecausetwopeoplefellinlove #mixedish #thoughtsfromthefrontline #stage4cancer #metastaticbreastcancer #pinktober2020 #cancerschmancer

And if I asked you could you tell me, what color is love?

Sunday, October 18, 2020

Pink Ribbons Won’t Cure Breast Cancer

I was originally diagnosed with Stage3 invasive lobular carcinoma of the breast in April of 2010. I spent over a year in cancer camp, which included five months chemo, bilateral mastectomy, seven weeks radiation. They poisoned me, cut me, and lit me up to kill that cancer. With each year that went by with no signs of it, I was so grateful I beat that bitch. Fast forward to 2018, an X-ray for a possible kidney stone showed spots on my bones. A CT and bone scan confirmed, 8 years out the cancer had spread or metastasized to my bones. What a blow. Stage4 breast cancer. We can’t cure you, we’ll do our best to keep you alive as long as we can. Median survival only about three years. I was so relieved my treatment back in cancer camp appeared to be working. Scans over these last almost two years showed no progression, although spots remained in my bones. My last scans were in June. What a relief. Still ‘stable.’ 

Oh Lordy help me when a recent colonoscopy & endoscopy revealed cancer present in my stomach and colon. Well fudge. I am awaiting additional testing on that pathology to determine is this the same cancer now progressed farther, or a new cancer diagnosis? Once determined, I’ll start a new treatment plan. Yay me. It’s Pinktober y’all. Less ‘awareness’ and more research on the only breast cancer that kills. Stage4 or metastatic breast cancer. Nobody no how no way dies when breast cancer remains in the breast and guess what? Even 30% of early stage diagnoses go on to metastatic breast cancer. Despite all the pink ribbons, the death rate for metastatic breast cancer has not changed. Why is that? Because only 2-5% of research dollars are spent on the only breast cancer that kills! We aren’t winning this war I’m a soldier in. Front line Baby. We getting massacred out here. Every thirteen minutes another of us dead. Every. Thirteen. Minutes. Early detection of breast cancer is not enough. Stage4 needs more. Every. Thirteen. Minutes. 

So this is my letter and plea from the battlefield. Pink ribbons don’t cure cancer. Want to help? FUND THE RESEARCH. We getting massacred out here. Every thirteen minutes another BC warrior dies. 40,000 dead from metastatic breast cancer annually. Take that $$$ you’d spend on Pinktober and pink ribbons and pink balloons and pink merchandising and instead FUND THE RESEARCH.

#stage4breastcancer #metastaticbreastcancer #mbc #pinkribbonsdontcurecancer #earlydetectionisnoguarentee #earlydetectionisnotprevention #wearelosingthiswar #pleasfromthebattlefield #fortythousandannually #stage4needsmore

Saturday, October 17, 2020

When there’s a bend in the road, make the turn Baby!

This was from a post five years ago, celebrating my life after a breast cancer diagnosis in 2010, as I headed towards my future. 

‘I wasn't sure if I'd still be me without my trademark big blond hair and my boobs. Would I still be me? It was not easy losing my hair, and even harder waking up from my mastectomy surgery to find a chest as flat as a kitchen counter, where two fat bunnies used to be. Greater than that, would I survive? I found out though there is a me that was not diminished by cancer, despite all of its obvious losses. I found out I was stronger than I thought, loved more than I realized, hair and boobs do not make the girl, and on my worst cancer days I could still see something beautiful in me. I traveled to the Kingdom of Lost Breasts. I walked through the Valley of the Shadow of Death and reclaimed my Faith. I am an overcomer. I am blessed by an awesome merciful God. I don't know why I was spared when others weren't. Maybe so you could hear my message. God is good. Love your life. Your health is like gold in your pocket. The good is for today. Help somebody. Forgive somebody. Love somebody. Be kind. Laugh louder than the crying. These are just a few of the things I learned in cancer camp.

AND it's not just about our boobs. I hate those slogans like 'Save the Tatas.' It's about our lives. Despite all the strides in early detection and treatment, in the U.S. 40,000 will die of breast cancer annually. Women of color have the highest mortality rate, often due to late diagnosis. Know your risks. Make your peace and health a priority. I'm five years out from Stage 3 lobular carcinoma breast cancer. It was in my lymph nodes too. Every single new day I remain cancer free is a blessing and a gift. Oh what I would have missed if cancer had its way. Thank you Heavenly Father for the legion of angels you sent me, and for Your grace that out of my sickest darkest place I received the greatest healing of my life and heart and marriage.’

Fast forward to 2018... It was so discouraging and disheartening when breast cancer metastasized or spread to my bones in late 2018. Oh what a blessing though to have almost two years of remaining stable, despite being Stage4 and back in cancer camp. This is no small feat given the median survival after metastatic breast cancer is about three years. 

Fast forward to 2020... In recent months I’ve had lots of nausea and indigestion, which is typical for the treatment I’m on. Even though my recent scans in June showed no progression, I recently had a colonoscopy and endoscopy just to take a look around. I’m sad, discouraged and disappointed to tell you there has been progression. Pathology confirmed there is now cancer in my stomach and colon. Yikes. πŸ₯΄

This is typical of Stage4 breast cancer, a treatment can work for a period of time and then unexplainably stops working. Then you’re on to the next treatment and so on. Additional pathology is being done on my tissue samples to determine if this is the same lobular breast cancer that has progressed, or a whole new cancer diagnosis. Gulp. Once this has been determined, I’ll start a whole new treatment plan.

Will you pray for me and my family? Pray for my peace in the storm, my strength and courage, my healing? Will you pray for my Hubby, who worries so about me, feels so helpless, and is devastated thinking about his life without me? Will you pray for my sons, Adam and Zac, who are so amazing and supportive but this is hard. It hurts. Hurts bad.

Other than the love of my family and friends, the only thing that keeps me going is all the silver linings and angels on my path, all signs of God’s faithfulness during my first trip to cancer camp ten years ago! I know without a doubt He will use this to blossom purpose out of my pain. I know there is a divine plan for me, and I’ll do my best to keep showing up for my sacred ordinary life, and laugh louder than the crying. 

Love Deb πŸ’—

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.



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.'

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.

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????

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