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,

today

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.

 From cancer.net

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 breastcancer.org

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







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