Enhertu #12: Aka The Last One Before I Move. + Zometa

It can be sad to leave a place you have grown to love.  Weird, that I have positive feelings for this place,
but the people are wonderful and have worked wonders in my life while I've been a patient here.  What better way to help them never forget me than showing up with a bunch or party boxes of cookies?

Today was the normal schedule of things.: port accessed, meet with Dr. Cole, head to the other side for the infusion, wait for pharmacy drug lord sloths to approve and mis my drugs. I've only been on this exact treatment 11 times before.  CAUTION! Patient might have a life-ending negative reaction this time. We must check and double check everything to save patient from her oncologist....just in case.  

With my last appointment with Dr. Coolio, the cancer part of it all was all good news.  My labs today and vitals are looking to be in top-too shape.  Everything is in normal range!

The scans results also look great. 1)Nothing new in my brain.  Only saw residual from previous radiation there.  2)Abdomen looking good.  Lesion previously found on pancreas is nearly undetectable.  Everything else is also very tiny or no longer seen with CT 3)Results are mostly unremarkable.  Fix noyivr the remnants of something un my lungs, but most likely left over from inflammation (not cancerous).

Not too shabby of a last report from UT Southwester Richardson/Plano!

This will be the last time I'm escorted to the patient room to meet with Cole or Alisa or any of those nurses.  When I strolled in with boxes of cookies, calling out "It's Cooper's last day!" some thought that it was my very last day of chemo.  No...just at this place in this state! 

All hooked up and ready to start.  Use in room 1: We might for the first time for the last time, and I'm sorry that you didn't want a cookie because you didn't want to ruin your healthy lunch.  I wish you good luck.  

I've been through all the seasons with this view once. (All two of them that seem to exist here--three days ago, it was freezing, and I was scraping ice off my windshield; today it's trying to reach record highs with 3- mph winds and gusts up to 40 mph!)  It will be a new adventure at a new setting with new hospital staff to meet.  I accept the mission ahead.  

And suddenly you just know it’s time to start something new and trust the magic of beginnings.-- Meister Eckhart

As our move from Texas to New Mexico draws closer---5 days from now to be exact---I think about all the comments I've received and gasps of shock and concern about all the things that need doing before a moving.  

"Why there?"

"Will you be close to family?"

"What about your cancer treatments?"

"What about your boys and their schools/friends/sports?"

"Do you have a house yet?"

"Did your house sell?"

"Are you nervous?"

Yes, I'm nervous.  Who wouldn't be?  I'm headed to a new state, setting up another home, starting up with my FOURTH oncologist, registering three boys into new schools and sports teams and going to a place I've only driven through a few times in my life on the way to somewhere else.  I am nervous, but also excited.  When this opportunity became an actual offer, Stephen and I looked at all the positives and negatives.  We pondered and prayed and partitioned our parents for advice. It all came down to feeling at peace with this new path,  There is some purpose in thiexperience. I know it.

In addition to my plan for striving to stay alive for at least one year at a time to allow new chemo to come way, I also believe there is a purpose in me living Whether it is just for me to continue to experience the world, or being a mother to three children and a wife to my husband, or to inspire, uplift, teach and shine light on the unfair and unexpected troubles that come to all, while attempting to be an example of faith through affliction, I'm not sure.  I could just be lucky, but all the miracle sI've seen through this journey tell me that's not all.  There are countless reasons  for me to stick around. 

Hopefully,  some of those reasons for this new adventure will become clear soon, but if not, I will keep fighting.  

For anyone thinking of taking their own new first step into an adventure, here's some words that others have shared:

 .     

The purpose of life, after all, is to live it, to taste experience to the utmost, to reach out eagerly and without fear for newer and richer experience.

Eleanor Roosevelt

Every man’s life ends the same way. It is only the details of how he lived and how he died that distinguish one man from another.

Ernest Hemingway

You must go on adventures to find out where you truly belong.

Sue Fitzmaurice

If we were meant to stay in one place, we’d have roots instead of feet.

Rachel Wolchin

One way to get the most out of life is to look upon it as an adventure.

William Feather

“Then one day, when you least expect it, the great adventure finds you.”  

Ewan McGregor

Last Scans in Frisco

 It never fails.  Every time it comes time for scans, someone asks if I'm nervous/worried.  

I'd be lying if I said that bad results were never on my mind, but I prefer to focus on the positive.  There have been great scan results in the past and terrible ones, too.  But, I hold on to the hope that things will work out fine.  Whether these come back still clear or with news of a new tumor growth, I know that I will face and fight it with faith.   

The techs have come and gone over the last few years.  Only one of my two personal favorites, Dan and Suzie, remains.  Dan has moved on to a different hospital, and Susie shared that he asks about me every they meet.  They have made a great impact in my journey.  After hearing this bit of information, my mind pondered on how I have made an impression on them, as well.   Why do some people come in to our lives for such a short time, but leave a lasting influence? I'm not sure why or how it all works, but I do know that kindness and smiles do wonders.  

The scans went well.  I feel at peace, either way the results come out.  I know that I have support and love from so many sources that I will be empowered to continue fighting.  

I had lunch with one of these sources, this week.  This friend has been an incredible example of strength and faith in the face of hardship.  She has endured great trials and kept up her fight in all the hard things and is beyond strong. And, she told me to not give up the fight.  She helped remind me that "I can do all things through Christ, which strengtheneth me." (Phillipians 4:13) When I believe this and become this, I feel that I am truly strong, like my strong friend, and can keep fighting.

January 2022 marks NINE YEARS that I have been on this journey!  I joked in the beginning, that I just needed to keep living a year at a time, and the next new drug would be released.  As I think on my gratitude for this year, my mind knows that all the wonderful memories from this year are because of this new drug I have been on, and doctors and nurses and family and friends who have ministered to me.  And, they are all , whether they realize it or not, acting in God's name.  

And, this love, service, and charity is what this time of year is all about.  I have the hope and faith to keep on fighting and kicking cancer to the curb.

The Real Enhertu #11

 It was an early day at the Cancer Clinic.   I don't love being ready to leave the house to get to there on time at this hour, especially when my children are out of school and left behind.  I did trust them to not burn the house down or break any bones while I was gone for the morning.  

The great thing about having the early appointment of the day is that you get in without delays and you get to leave closer to the expected time than if you were to be held back by the need to wait for other patients clogging up the time slots before you.  

I was in and out of the lab draw area in only a few minutes and on to the appointment with Dr. Cole's PA, Alisa.  It's sad to look around and have it hit hard that my time here is coming to an end.  I will miss the wonderful people I have met here, who work with such love and kindness and have become another cancer fighting family to me over our time spent together.  

Alisa was excited to announce that my labs ALL look great Even the liver enzymes were right on course.  We chatted about Thanksgiving day plans and the plans for my family's move to New Mexico.  I mentioned a possible UTI flare-up and requested some drugs to knock it out quickly.  (Cranberry juice just wasn't enough.)To have this request filled, I did need to pee in cup, but I was right about the problem.  My internal waste management systems just can't seem to get it right these days.  I'm either clogged up in the back or overflowing in the front.  I would just like to be able to return to homeostasis.  Until then, about all I can do is continue to experiment on what I take or drink and how much or how often to try things like powder vs. pill de-cloggers and at what point those have gone too far.  The problem increases when the opposite conditions can't find the balance betweenI needing something on board for pain, but the pain medication clogging the system right back up which then leads to the need for an equal and opposite solution.....let's just say, it's a work in progress.  

Today's treatment went smoothly, as predicted from capturing the first time slot of the day, and I was done and headed home before lunchtime.  

On this week of Thanksgiving appointment, I am reminded, yet again, of all the many things in my life for which I give thanks.  I am forever grateful for all those healthcare workers who have been part of my journey.  I said from the beginning of discovering that metastatic was forever that all I needed to do was to fight long enough for the new drug to be approved and released.  That was back in 2015, and I'm living it today.  I'm thankful for friends who give up the time to drive me to appointments and keep my spirits up.  I'm grateful for the minds that are given the inspiration and talent to develop the things to keep me alive and able to live.  The blessing of doctors who truly care is beyond words.  

As I continue to work and fight and face setbacks and rise back up to try again, I know that I would not be here without my faith and family and friends, as well as so many prayers from so many others.  I know those conversations with God have helped to lead to miracles, both great and small, straight from heaven for me and my family.   God knows me and knows that I can be an example of his love and his joy as I travel down the hard roads without giving up on seeking the light that, at times, can feel like it might be dimming. Light banishes darkness. Joy can create joy.  Love can build more love and kindness.  Expressing gratitude for blessings teaches great lessons on humility and true happiness.  

It does take time to build the necessary skills required to constantly carry on with only positive perspectives.  For some, the challenges in life tend to naturally head toward the negative, but it is possible to change out this pattern for something new.  Each step forward in the journey to overcome trials with a grateful heart, gathering recognizing and gathering joy along the way, builds strength needed to proceed.

    

Enhertu #11 That Never Was + Dermatology STAT

 After such a horrible week, why not junk it up a little more?  

Dr. Cole was not thrilled about my rash, and wanted me to take a break from Enhertu for the day.  

*Good News Alert:  Remember those scans and the high liver enzymes?  They can sometimes be side effects of the drug, but the scans showed almost no cancer in my body!  The small amount of tumors that were hanging out had all been decreased in size by half OR MORE!!!  Plus, my liver was back on track!!!!!!

God continues to provide answers to prayers and multiple miracles.  

Due to the good response in my body, Dr. Cole thought it would be a good idea to skip the infusion for the day and check with dermatology, just in case, to make sure my rash wasn't drug-induced.  

Got an appointment downtown on the LAST time of the day on Friday.  Met an AMAZING doctor, who told me that the rash was NOT drug-induced.  

IT'S STRESS INDUCED!!!!  Imagine that? 

Gave me some drugs, and sent me on my merry way.  

I really am hoping for a little bit of calm this week.  

And, for my house to sell quickly.  

And, for my children to not go missing or lose any more important items.  

Is that too much to ask?  

A Horrible, Terrible Week

 I LOVE Halloween.  The year did me wrong.  

The weather was very windy, which botched our trunk or treat decoration plans. 

I woke up on Saturday with an ugly, itchy, swollen face, and a gross, red rash on most of my body.  It didn't help that my system was VERY PLUGGED UP.  

I had no energy and could barely get out of bed.  

I am also trying to run my house with a husband not here.  I feel for all the single parents out there because it is NOT easy.  In addition to that, I'm trying to pack up and clean up my house, getting it ready to sell.  Moving is a pain, anyway, and then trying to deal with it with being sick and fighting cancer? 

Then, there's all the things that need to be done with 3 busy boys in school and their own sports practices, plus church activities.  

Then, things started breaking or going wrong around the house or on technology....2 of my least strong areas.  

I took my youngest to the doctor to work on his toe, but it was infected, so we had to push it back until antibiotic had run its course.  

I was trying to plan that son's birthday party, and the company made a huge mistake by sending an email with MAJORLY incorrect information, and they couldn't fix that until the next day.  

My oldest son had a major problem with something that needed to the addressed that day, but I couldn't fix it.  Neither could the help center for the associated app, even after three different helpers and over 2 hours of call time.  It's still not fixed!

The front door lock went haywire and took three of us and hours to fix.  A front door lock is kind of important to secure a house, especially one that is hoping to have potential buyers come walk-through.  

A part of our sprinkler system was going off, in the rain, without it being turned on.  A valve we already paid someone to fix was broken again.  It was cold and raining and muddy to turn off the water to the system, and I was glad that my youngest son was there to help.  

I had to then attend a parent/teacher conference, not the thing I felt like doing that morning before lunch.  If you're wandering what that thing would have been, it was SLEEP.  Nothing but sleep.  

Rash continued to spread, causing more itching and swelling.  Not pain, thankfully.  That was owned by the poop chute.  Still no movement.

Fixed the party problem, but had fallen behind on getting invites out.  Printer problems with that, of course.  

Feeling the loss of 4 days of the packing and staging schedule.  

Found a weird rotted-out hole on the doorway to our upstairs balcony.  Had to find someone who could come look at it on a Friday.  

Wifi went out.  

Son with Dyslexia had fallen behind from the day he was out of class for the foot appointment and helping with the muddy sprinkler turnoff.  Hours later, we still weren't caught up, and he was tired and hangry.  

Not sleeping well at all.  

Lost the youngest son for over 2 hours, no one in the neighborhood having seen him and having no idea where he went.  A search party of both his friends and moms of friends couldn't even locate him.  

Then, I felt guilty for feeling sorry for myself on all of those previous annoying things, when I could lose one of my children!]

I Finally prayed and asked for help.  Obviously, I needed it.  For a few minutes, I was broken.  I thought about how fighting this hard for this long with so much pain, stress, and frustration just might not be what I want to do anymore.  

Then, I took a break, ate some food, and took a moment to listen to my heart.  

Son was found.

Wifi and tv problems fixed.

Found someone to work on the sprinkler.  

Found someone else to look at the house.  

The front door lock mystery was solved.  

I was finally cleared up--on the outside and inside!

So grateful for new days and things that seem like the end of the world in the moment, but are not so back with a simple change in perspective.  

Scans Downtown

 I really don't love fighting traffic to get to downtown Dallas for appointments, but it's not to bad when the people are so kind.  And, when I get a free gown and non-slip socks!

I was able to be worked in STAT-like.  The problem was the availability left me with a 7:00am appointment!!!!  That's not a good thing for me to think about having to wake up that early and trudge through morning traffic.  Thankfully, my aunt came into tow, and we made an overnighter of it in a hotel next to the hospital.  What a needed blessing!

We arrived on time, but CRNAs who access ports don't arrive until 7:30.  I insisted, though.  My veins have been wrecked over the years, and if there was one thing that could ruin a potentially easy day [other than nothing to eat until after both scans] it was a needle in the arm, trying to find a vein.  Thankfully, a lovely port accessor arrived a little earlier than 7, and everyone working with me that day was a peach!  

Soon, it was time to head home and rest and wait for the results.  

Enhertu# 10 + High Liver Enzymes

 I have been falling behind on life lately.  

  

I let some major stresses start to take over my life, and let other things get left off the list.  

I'm feeling better and ready to do a little catch up.

October 12, 2021:

appointment with Alisa.

Asked lots of questions.  

Should I get a flu shot and a Covid Booster?--yes.  [done]

How are liver enzymes?  Still low, but better.  

What to do about that?  Move up the scans, just to be sure tumors haven't grown up again to block the bile duct again.  

[Simple mermaid costume, as this was my only appointment before Halloween this year.  

What can I do?  

I've made it to TEN DOSES of Enhertu!  

Hopefully the scans will show that it's still working for me and kicking cancer to the curb.  

Cole, Scan Results, Zometa, + Enhertu #9,

 I was born stubborn. 

Coming in hot at 1:05 am, on a Saturday morning, fighting the diagnosis of the doctor, who declared I must have Mongolism.  My parents were the first ones to know that this one [me] was gonna be a challenge, even without the diagnosed disability. [I did not have Down's syndrome, and was just born with a genetic disability called Brachydactyly, which affected the full development of the bones in my hands and toes. I was born strong-willed, and ready with guns-a-blazing, nevertheless. 

God knew that I would need to develop this stubborn curiosity to learn to battle all the challenges of this life and to have the empathy to encourage others in their own.   Loud and active and full of energy and determined to get her way,  it took a big hit to slow this 2- years-old down,  but I kept going-eye patch and all.  I starred in hospital videos for other young, nervous patients to encourage them to not be scared at the hospital or to have surgery.  I appeared on The Children's  Miracle Network to help raise money for others by sharing my story.  These opportunities were planting seeds for a strongwilled, tenacious toddler to grow outward and upward and start to inspire others.   

I became an active and intelligently gifted and talented child, yet a perfectionist in many ways.  I tried a plethora of activities, but also started to get discouraged if I did not excel, or was too challenged because of the disabilities in my hands and feet to advance.  However, I developed ways to overcome and created accommodations, even when there were none.  God was strengthening me.

I was battled by bullies and taken from friends into a faraway land of even more bullies than a 12 year-old thought she could bear.  Tears and prayers and hope brought the blessings of lifelong pals and confidantes.   ..."and if [they] threw a party, and invited everyone [they] knew; [they] would see the biggest gift would be from me, and the card attached would say, "Thank you for being a friend."  I made it through high school [with honors] and the first failed semester of college, brought on by sickness because I found strength with family and friends.  I continued to find more as I traveled a different path and graduated with honors.  I was becoming my adult self and learning how to stay strong.  

I carry the blood of strong women, who taught me to get back up when I fell off a bike, or skates, or a horse, or rocks in nation parks, or semesters. They taught me to look up and keep going.  The strong men in my life taught me that if I scream and cry to get what I want, I will most likely be thrown in my crib while they clean up the glass from the new bottle of apple juice that dropped......among other things.  Those men taught about trying to solve problems before the era of the interwebs, to be a nice example to my siblings, how to stuff a turkey [and make stuffing in a casserole dish, now that we are no longer in the 80's food safety regulations], how to camp and fish and shoot a gun, how to show up on time [early], to remember my place, to make and keep goals and promises, to continue to seek knowledge and do the work that keeps us strong.  The most important was love

I was strengthened by finding my best friend for life and eternal soulmate, breaking off the engagment, pondering the reasons behind that, realizing I was mad stupid, and reconciling 2 days later, trying to mend his broken heart. We were married 9 months after that, struggling through career goals and several miscarriages and raising a stubborn and strong willed dog and finally having our first human child 7 years after tying the knot.  [He was stubborn and smart and strong willed, by the way, much to my father's satisfaction.]  After that first baby, my body figured out the problems and pumped out 2 more, one strong and small, with a naturally sunny disposition, who kept us all smiling, especially when he spoke his own language for years and told us things like his spoon was really "a fawck" or "Youwr gonna WOSE this instant!"  The baby was a surprise, a lovely and adventurous baby, smart-witted and loving.   He continues to challenge and teach and share and show true care and concern and try to be better and more mature, while he struggles to overcome his learning disability with grit.  I know he is strong, especially with no memory of life without a Mom who continues to battle cancer.  Perhaps part of me dwells and continues to download to them.  After all this and much more. my life love and battlefront Bubba, my strongest supporter, the one who loves unconditionally and battles beside me, my partner in it all, the man who shares his patience, perseverance, and problem solving in the age of the inter-webs, shares his strengths,  all the while helping this stubborn, strong-willed seedling receive instruction and learn to overcome.  We are still going strong, over 21 years later. 

 Life and love is a challenge, a battlefield even, some might say.  I am still fighting, not just cancer, but how to become better and be better.  God is teaching me to try, He is helping me overcome.  As I pray to completely cure this disease [both of pride and cancer], He has carried me, but more often, He shows me how to plant my own feet in the sand and continue to hold His hand.  He is walking beside me, filling my heart with faith, watering my soul through hope, pouring out promised miracles, only asking me to continue to follow Him, even through the failures and fires that are placed in my way, mostly to teach and to purify.  

The Lord is my strength, so why should I fear? He is teaching me to be truly strong.  

*************************************************

Over the last three weeks, I've had more extra appointments and tooth concerns and fighting challenges of fatigue and nausea/vomitting/constipation/diarrhea than I have over the whole time on Enhertu.  There have also been family Covid challenges and sleepless nights and virtual schooling, but solutions and negative tests of everything from Wuhan to strep and flu [all negative.]

Even with all these challenges, I felt at peace about the results of this 2nd set of scans to see if this miracle drug is continuing to be so.  

Headed up with one of my longtime cancer Lyfts, Lori.

Luckily, the labs from before the scans were still valid for today.  I met with Dr. Cole, right away, which doesn't happen so much anymore. I'm usually having to wait for quite awhile.  She walked in with the miraculous news for which I [among others] had been hoping and praying.  

My scan results did not dissapoint!!!

Brain: 

1. no enhancing lesions which might suggest enhancing metastatic disease.
2. no additional recommendations.

Chest: 

1. no chest adenopathy.
2. stable osseous mets of thoracic spine.
3. no new pulmonary nodules identified, previous stable at less than 1mm.
4. most nodules are not clearly calcified, but given stability since 2018 they seen consistent with benign disease.

Abdomen/Pelvis: 

1. hepatic and pancreatic lesions continue to decrease in size.
2. no definite residue of the prior soft tissue nodules in identified.
3. bony structures appear stable.

For those of you who do not "Habla Espanol," or speak medicinese, all that is just simple radiologist talk for: 

IT'S ALL LOOKING OKAY, AND MAYBE EVEN GOOD!

With that reason to celebrate, it was time to head to the infusion side of the office for my dose of nausea meds, steroids, Zometa, and Enhertu.  

These miraculous results have built me up to keep kicking cancer out of my life! Thanks to all who pray and fight and strengthen me along the way. 

 

Enhertu SCANS #2

The bad things about today's scans are having to check in and have my port accessed an hour before the scans can begin and that I could not eat for two hours before.  [That would not have been so bad had the appointment been for earlier in the day, but I wasn't able to eat lunch until after 2;00pm].  

The good things about today's scan appointment are that I no longer have to drink those terrible barium shakes and that once the scans begin, they are over so quickly.  

I do miss my pal, Lance, though.  I did get a message from him that he says hello, so that evened out to a good thing.  

The hardest part of today's scan is waiting for the results.  I hope they are positive!  

 

ECHO

 I did not realize that an ECHO is needed every three months on Enhertu.  I guess it has some of the same components as Herceptin, which did need these heart checkups, as a side effect from that drug is cardiomyopathy. I guess the list of side effects for my new drug was so hefty that I must have overlooked heart function this time.  

Here we go again.  It's nothing new.  

Everything from the waist up comes off.  

Robe open to the front.  

And just like that---the test is done.  

I am reminded of the 20th anniversary of 9/11,  Stephen and I were both attending Texas A&M.  Our school is awesome.  20 years ago, students formed a coalition with the shirt company that had already established "Maroon Out" t-shirts.  They imagined a concept of a "Red, White, & Blue Out" game, the proceeds going to support the hero's in NYC.  For the 20th year commemoration, Aggies did it again.  It's crazy to imagine that 20 years have gone by since that horrible day.  I feel for all those who lost and am glad to have the cost of a t-shirt go to help the families of victims.  

I also read a journal entry from that day:

I was at A&M, starting my senior year. Stephen and I had this old tv that took its time to warm up. It went to a Spanish channel first, for some reason, and then switched over to cable. Right as I heard the English of the Today show switch over, I saw the picture of a plane that had crashed into one tower of the trade center. As I was watching to learn more, I saw a second plane crash live. It was all a bit alarming, as no one seemed to know what was going on. 

Even as this terror was occurring, classes were still in session. I kept trying to check in as I could, but didn't even have a cell phone yet!

It wasn't until I finally walked in the door after classes, that I saw the true devastation. I never for one minute thought the towers would collapse. I remember that when I walked through the door, I saw the smoke and debris from the first tower collapse and the second one collapse live. I stood in front of that tv and cried and cried.  

All those people--in the towers, in the planes, and on the ground, who had gone about their mornings as usual, not knowing they wouldn't be returning home

That evening. Heartbreaking. 

As hard as it was to see the evil and hate that exists in this world, the humanity and love that comes through when we pull together to help each other through tough times also exists. There is always light to be seen, even in the darkest of times. 

I will never forget.

[Even in the midst of terror and pain and sadness, there is hope.  I have learned a piece of that lesson as I have and continue to fight the darkness of cancer.  May I never forget and never give up.]

Results came, and my heart is in the low-normal range.  

Time to keep on fighting this beast.  

It seems my heart is....mostly....in it.