MRI + Dr. Scranton + Miracle on 22nd Place

 

After a week of trying to right a wrong with my insurance company to get back on track with my treatment plans, it was off to Lubbock to boot the (hopefully) small tumor out of my brain.  

I'm so grateful for people who have saved me by driving me to appointments (along with too much service to mention) over the last nine years.

One of those top givers in my journey is my Auntie Deb.  I'm so glad she was able to be with me for the day.  

First, it was time to gown up and prep for an updated MRI.  The machine in Lubbock is more advanced than the one in Hobbs, and the doctors wanted to have as accurate of pictures before gamma knife radiation.  

con

The tech working with me seemed to not be in the best mood.  He had little interest in my stories of PTSD with IVs.  Convince in his superpowers, he forged ahead with the needle--no numbing meds, no attempt to inquire about someone to access my port--A POWER PORT, I might add.  I warmed about my veins that seem fine, but ALWAYS roll and blow.  He brushed off my concerns, sweaty palms, and stated discomfort, and forged ahead through scar tissue from my college days plasma donation scar into the unknown with little to no care for me.  He jabbed and tunneled and caused bruising and frustration before finally making it to the correct place,  I was not thankful for that.  However, that part of the day was soon over.  

Then, it was time to wait for results and to meet Dr. Scanrton, the neurosurgeon.   

I felt a bit guilty for my frustration and impatience with Dr. Scranton, thinking him unnecessary to my health plan team.  He was very kind and thorough.  He seemed to genuinely care about my life and health and well being. He reported that my lab work looked good.  He asked necessary questions about my health history.  Finally, he pulled up the current scan results.  

After reviewing them for a few moments, he expressed his overall feelings about my desire to fit into the schedule for treatment later in the day.  "I do NOT recommend gamma knife radiation for today."  I could feel my frustrations beginning to bubble over.  "WHAT?!?  Why not????"  

"I don't think you should have it done today because I do not receded brain radiation AT ALL for now.  The tumor recognized from February 2nd is not seen in today's scans.  The previous areas of concern have all revered themselves.  Both the radiologist and myself are of the opinion that there are no tumors in you brain at this time."  

My head and heart and soul immediately stopped trying to bubble over in frustration and thanked God for another miraculous moment.  

I do not pretend to know how to read or explain any of these scans, and I did not take notes.  All I know is that today's scans were carefully reviews and compared with the most recent three from the past years.  Yes, currently my brain shows some signs of scarring from past radiation, but today there is no cancer there.  

 How blessed I continue to be. Yet, I continue to be shown that I still need to grow. 

With struggles and frustrated in things that were beyond my control, I was reminded that nothing is beyond the control of the Lord.  If I would humble myself and trust in His power, I could avoid some much of the anguish in this battle.  

Enhertu#16 + Steroids + A Rough Week

 

It's chemo time, again!  Three weeks can zoom by.  This time around, it's been rough.  I've been fighting to figure out insurance.  In order to avoid paying more out-of-pocket deductibles than necessary with this work-related move, we decided that it would be better to do Cobra insurance this year.  The math made sense.  What didn't quite add up was the understanding that all the insurance that we' ve paid wasn't being counted somehow, and our policy had been disconnected.  Hours on the phone and on hold, looking for answers and trying to translate English spoken in dialects that are difficult to understand, no answers in sight were worrisome.  I was unsure if my appointments that I'd been waiting for for nearly two months would be able to happen.  I was worried and exhausted from all the time with no progress.  

Finally, last Friday, we made a discovery. The person whose job it is to put the insurance money from the company into the insurance company realized she had made a big mistake: send our Cobra money in with the other money, where it got lost in a deep pool of nothingness.  She was able to call and straighten out the knots.  She even had a new number to call and a reinstatement number for reference!  However, this would not go into action for at least two business days.  

Fast-forward two business days.  I had my #16 dose of Enhertu.  The nurses were concerned about what I would need to pay out-of-pocket to cover this treatment without any insurance.  I was feeling helpless, as the concept of me having insurance was true, but it just couldn't be shown online.  I technically had insurance, and this should not even be an issue, but I was at the mercy of the insurance company to make the necessary changes to make it all right.  

I got into action when the next step was possibly canceling the long-awaited appointments.  I've been waiting around for almost 2 months to get these tumors shot out of my brain before they grow too large for that treatment to work! 

Luckily, I was able to get a customer service rep. with a heart.  When there was no other solution, I plead my case, telling her that my cancer has always been aggressive.  I've already given this beast too much time to grow without treatment.  I'm supposed to have radiation that will knock it out, but that just might be cacncereled, due to a mistake that had been made by someone else.  We are paid up and on time.  However, it looks like the opposite.  I plead with this woman and begged her to help.  I didn't want to have fought cancer so hard for over nine years, only to die because insurance was denying me.  

That set image her on a mission.   She sent an URGENT message to a higher-up and assured me that this would be handled by the end of the work day.  It was hard to believe after all the time I'd already spent, but I moved forward, believing her.  (My health care team was on board, even prepping my brain for the next days with some pre-meds of steroids, etc.)

After treatment, I went home to pack an overnight bag, still hoping the next day's plans would happen.  My aunt met at my house to travel to the appointment.  Before we had the car packed, my phone rang with good news:  The insurance had officially been reinstated!  

That was the good news I needed to head on our way, get something to eat, and rest up before the early morning of another treatment day.  

Somedays I wonder why all the little pieces have to be so difficult.  Fighting cancer-period-is hard enough!  You would think that these hiccups could ease up and work together, instead of causing me unwanted anxiety and a huge waste of time.  However, without the struggle, the success would not feel quite as sweet! 

Enhertu #15 + Zometa + Baby Steps to Treatment

 

Here we are, already in March.  I'm hoping for a lot of luck to head my way.  Here's to the Gingers of the Irish + the good fortune of the green and gold.    

First bit of luck: lunch of green Chile enchiladas. Although it was not Irish, this dish brought in a New Mexican hint of great hopefulness.  

After having been kicked out of MyChart, my health app, after working on getting set up for hours at the last chemo appointment, my low points of frustration and sarcasm were fighting to take over and knock out the hope and joy.  I couldn't get any messages in or out to my providers, other than through phone calls.  The schedules of those calls never seem to work out, especially when I'm working with health care locations in two different time zones.  In addition, trying to transfer all the paperwork from my past appointments of gamma knife radiation in Dallas/finding times between my regularly scheduled chemo/making trips to Lubbock to meet with a neurosurgeon/another MRI/and then FINALLY making the actual radiation treatment appointment were all gumming up the machine.  

Today is exactly ONE MONTH since diagnosis with these new brain tumors, and we've only made baby steps in the process.  I have 2 out of the 3 major steps set up, but they won't happen until THE END of THIS month, after having to shuffle around schedules between the two locations.  All this waiting, and the main treatment that will zap out the beast is still on the wait list.  I'm getting a little anxious because I know my own history with aggressive growth in cancers' past. I can't help but think about the very beginning of the journey when I waited a month between mammogram and treatment and my oncologist at the time told me that she was concerned that the tumor in my breast doubled in size during that time.  I really don't want this time to be like that.  I just want to get it all to work and at an efficient timeframe 

Why does this have to always seem so difficult? 

Here is where I really have to have faith in prayer and happy thoughts that all the moving pieces will somehow make me whole....Again.....In time for my planned beach trip next month.  Maybe with enough luck and love and grace in the waiting place, these pieces of the puzzle will all end up fitting exactly in the perfect place and time.

Here's to hope and faith and a little bit of luck, I'll continue to BTHOC.

Don't worry.  As long as all the pieces will just come together and the baby steps will get a little bigger and faster, so I will be able to get to all the appointments at precisely the right times, and stay completely still so the gamma knife radiation will strike at the precise locations.......everything will be fine.*     

  

*Bonus points to those who can connect that last statement with one of my all-time favorite movies.  

Enhertu #14 + You Win Some; You Lose Some

It's been a long week.  A quick overnight trip to Lubbock for food at restaurants we don't have and shopping at stores not available over from Friday night through Saturday, a late-night wrap up of the prep for my Sunday School lesson, and no time for a much-needed Sunday nap was exhausting. I did not feel well Monday and stayed in bed & bathroom most of the day [there was no beyond.]

 We heard from the seller on the existing house we had decided to put an offer on.  They had decided to increase the price by $100,000.  That's a nope. No need to negotiate. Time to change directions. 

Tuesday was filled with, what felt like, endless laundry. Thin mints and the Olympics got me through. 

Wednesday began in a rush. I had an early morning of getting Kyle to school for a private bassoon lesson with the band director before school began. There was no rest after that, just rushing home to shower and prep for what I thought was a meeting with Dr. Sun to plan my MRI + gamma knife appointments in Lubbock.  As I was walking out the door, the Cancer Center called to inform me that my chemo had not been delivered on time, and would hopefully arrive the next day.  No news about the Dr.  I don't think these people realize that my tumors are not slow-growing. If history repeats itself, waiting too long could turn this "very small" tumor into a medium. We set up a tentative appointment for Thursday, if the drugs arrived.  I was able to contact the office of Dr. Birdwell, and the miracle worker who answered the phone had a glorious idea.  She suggested contacting the actual surgery center to check with the nurses.  Perhaps they could recover the surgical notes on file, which should have my port registration.  Possibly, hopefully, this would be the missing key to prove that my port is truly a Power Port, and could be used to-co unlock this New Mexican lockbox of coo-cooness. I still do not understand why so many LARGE cities in TX have NEVER required that documentation in order to use the implant and give my sad and over-poked veins a break. I had high hopes that this could work out, and the extra day was the time needed to get it all together.  

Thursday was a less crazy morning.  My appointment was scheduled 45 minutes later than Wednesday's had been.  I still took a quick shower and kept. up on the never-ending laundry.  I was making great time until my phone rang.  Great, I thought. The drugs STILL didn't make it, so it's going to be the Center calling to push this appointment to tomorrow.  My assumption was incorrect.  

This call was from Carol, Dr. T's nurse in Lubbock, with news on why I had heard nothing from Dr. S about gamma knife.  Apparently, in Lubbock, ANOTHER doctor needed to be brought in. This procedure could just *not* be done without a neurosurgeon involved!?!  Again, this wasn't this case in Dallas, but what do they know? My guess is that another MD-iety needed to get his hands in the pot, at least for the cost of an office visit--another chink in the chain of saving my brain.  Ugh.  And, this call made me LATE FOR MY APPOINTMENT.  

I could only hope that the first girl in my cancer journey, Ginger, along with my "Smile, It's beautiful" shirt would help put the frustrations behind me and remind me that this process has been long, but I should be grateful and smile because it continues to keep me alive.  

Hope, loud music, a few smiles, and an easy drive cleared my head--too bad those couldn't clear my brain.  The sun was shining, and I had the solution which would hopefully unlock access to my port.  The ladies at the check-in desk smiled and asked me nothing about my late arrival.  Win #1.  Tania, my infusion nurse called my name quickly, even before some other patients who had been waiting longer.  Win #2.  [I figured it was because I had been waiting over 24hrs for my appointment.] My BP was low--91/62, even with all the stress and temp was normal.  Now for the hard part.  Would my paper be enough to prove the Power Port was perceptible?  Tania collaborated and acknowledged my frustrations, explaining that every nurse, and tech in the center could testify that the device in my chest was truly a Power Port, simply by identifying the bumps that poke out, creating what I call a "Braille Triangle" through my skin, showing the entry point to its access.  However, this center will not take testimony from any amount of doctors, nurses, patients, Texans, spouses, or any witnesses; only a piece of paper with a registration number will do.  Tania's validation of my frustration was Win #3.  My labs were in normal range, and the drugs were in stock.  Win# 4.  I met a lovely volunteer, Mary, who shared her story of 40 years in Hobbs, started with her husband's work transfer.  She brought a pillow, warm blanket, a free lunch, and a smile.  Win# 5.   

The copied paper with possible Power Port proof was approved and placed in my online portfolio!  Wins #6 & 7.   I was able to get the prep drugs and Enhertu with no side effects.  Win #8.

As my time was almost up, Tania asked if I had the app to connect with the center.  I tried to log in with no luck.  She sent an email with an activation code, but I did not receive it..even after looking through the junk files and waiting twenty minutes.  I tried with a different email and password...nothing by errors and messages of "we are unable to validate you identity" or "call the help center" or "contact your doctor for an activation code."  Nothing would work, and I was running out of ideas.  My treatment for the day was done, and Tania unleashed me from the machine.  I cleared my bladder and told her I was done with the app for today.  She tried one more option--texting.  Within 3 minutes, I was logged in and making a payment on my bill.  Win#9.

Should I have asked for more help before I wasted this time in my already long day? Would that have taught me any less?  Or, did I need that reminder that nothing in this process is perfect, but having a team will help me press forward through the losses to recognize the wins?  

An answer came, after my post-infusion BP reading came back 117/80 something.  Frustration and anxiety never conquer fear.  Only faith can do that.  New shoes, complete with spikes, can help.  I will continue to fight and BTHOC.  Win#10.  

And, anyone that needs a little positive word of affirmation to crush out frustrations, this popped up in my feed yesterday.  

This could not have resonated with me more today.  As I reflected on all the ways this could apply to the ups and downs of my life-specifically the wins and losses of this battle with the C beast, I am reminded to continue to pray and keep on living and recognizing that prayers have been answered in the past, and will continue to lead me down toward that perfect path.  

Scan Results

 As figured, I was unable to find my Power Port card to prove its existence in my chest.  However, I was able to call the office of the surgeon who placed it there, sign a medical release, and receive and copy of the surgery report.  Hopefully, that will be good enough.  

Also, I was reminded that NINE YEARS AGO this week, I had my very first chemo.  Still fighting.  

My appointment with Dr. Tafur to discuss scan results was scheduled for 11:30, but I arrived early.  This was a busy day in the waiting room, as he only travels here once a week, normally on Thursdays, but this week a day early.  

I finally made it back to a room and met with a nurse from the clinic.  She asked all the typical health questions and took vitals.  

Then, another nurse from Dr. Tafur's office asked a million questions, which I thought I had answered in Lubbock on my first appointment.  Apparently, they didn't have a complete list of ALL of my surgeries and cancer history.  

After that long list of mind stretching history on dates and drugs, the nurse then had me strip down on top and change to the shortest gown I've ever been given.  It felt like a belly shirt!   

She examined me and checked that I was still breathing and that I truly didn't have breast prosthetics, as I had already answered.  

They're real tissue, and they're SPECTACULAR!

It's an hour later, at this point, and I haven't seen the doctor yet.  

Finally, he walks in with the news.

CT shows no new growths in my thoracic and abdominal areas. 

However, there are two new areas of growth in my brain:

A small 3mm lesion in the left occipital lobe.

A subtle 7mm linear area at the lateral left cerebellar hemisphere.  

Luckily, the radiation oncologist, Dr. Sun, happened to be in the building today.  He would meet with me shortly.  

I felt a bit relieved that he only discussed the "very small" 2mm lesion, and explained that he could do gamma knife radiation in Lubbock, "most likely next week."  He also mentioned that he wanted to get records from Dr. Wardak and a new MRI, hopefully the same day as the surgery, but if not, the day before.

I wondered why he needed another MRI, as I had just had one two days before.  (At what point will all these radioactive contrast drugs actual CAUSE more cancer?)

He explained that he wanted to be certain that he was gamma knifing the correct spot.  

I joked and asked, "You mean that you need a Texas-grade MRI machine?"

He let out a tiny chuckle and gave me a simple and straight-faced, "you're funny."

Funny or not, I'll be headed to Lubbock, hopefully next week, for my latest shots to my brain.  

I'm very grateful that Dr. Tafur ordered new scans so that we could discover this lesion early and work on kicking it out of my head.  

I finally got home and was able to eat at 2:00, as snow was falling and sticking on the ground.  

New Mexico Baseline Scans

 Dr. Tafur, my new oncologist, wanted to have updated CT and MRI results at the start of my treatment with him.  Thankfully, I did not have to drive to Lubbock, but could have the tests done in Lovington.  However, unbeknownst to me, I apparently needed to show my "Power Port Card"?!? Never ever in Texas was I asked for such ID.  

"Do you want to run home and get it?" I couldn't even think of where in the actual world this stupid piece of cardboard would be.  In a box? In a recycling center in Frisco? There was no telling.  They would accept my word that I have had all of my Covid vaccines + booster, but they couldn't take my word that the device in my chest was indeed an official Power Port, capable of withstanding the liquids required for scans.  No evidence from my cancer journal or cancer blog would suffice.  

The only solution would be an IV.  

Not only was I frustrated with the whole situation, but I was not looking forward to being a pin cushion for needles.  My veins look good, but they roll or blow.  99% of the time.  The ONLY 2 people who have been able to properly access one of my veins, without pain and on the first time,  have been my husband and his brother, both CRNAs.  Even before cancer, this has been a problem.  Prior to every surgery, every procedure, and every birth, I've been the victim of painful IVs.  Apparently, I have a bit of PTSD in this area, and reacted like this: 

The head nurse, Audra, was called in and listened to my literal sob story.  She assured me that she was very good at this.  I explained again.  She raised with numbing meds and the use of an ultrasound for the process.    

She was very good and got it the first time.  

I was still unhappy with the whole thing.

Let's get going on these scans.  

I'm upset and hungry.  

When you're hangry, what's better than a *delicious* shake?

The don't do vanilla here, though.  

Bring on the flavored water drink, which tasted like watered-down cough medicine.

Not my favorite.  

CT scans went fine. 

 I was still teary when I checked-in, and the kind woman at the desk came out to bring me some Kleenex and ask if there was anything else she could do for me.    

After that was finished, the tech walked me down to the next scan: MRI.  I haven't done this test in quite some time, as my UT clinic didn't have one of these machines.  

MRI tech, Bud, was so kind.  He chatted and asked what had gone wrong for the day and assured me this would go quickly and then I could finally get some lunch.   

Some days are better than others.  

Today was a rough one.

However, there were so many amazing people who gave of themselves to help with my frustrations.

This place still gets a stamp of approval.  

Time to keep on going.    

Enhertu #13 + Zometa + Seeing the New Clinic

I came to chemo by myself today.  

This hasn't happened in a LONG time, but it was just fine.

(Pay no attention to the potentially confused/negative look on my masked face, as it has more to do with trying not to have the squinty eyes from the sunlight streaming in through the waiting room windows!) 

I met my new nurse team and got the lay of the land.   All was wonderful.  There's all kinds of amenities and freebies to explore.  Free lunches, free snacks and drinks, my own personal tv, a community puzzle/game table, and a whole bunch of swag for the first time.  I almost felt like a celebrity.

My labs were just fine, and I was ready to go.  

The only downside so far is that I no longer have my own, private space.  It seems as if I got a little too used to a private treatment room for the last few years.  This clinic is back to the large group setting, an open patient situation, where all patients are in a community setting.  (Mostly, it's no big deal.  It's just difficult when Abuelita has her phone of highest volume, speaker calls for her entire treatment time and  the whole place can hear niteo (the grandson) screaming and crying at the top of his lungs.  

Soon after that, I remembered that I had a spare set of ear pods in my purse, and all that loud familia convo was blocked out of my nearly perfect day.  

Then, the bonus for the day was getting to go back to the private shopping space for survivors.  I got to update my head gear with the newest on turbans and turban decor, as well as my choice in a room full of new heads.  Here's the first day's choice, and there is promise of more.  

I think I'm gonna like it here!  

I plan to get these foot prints into the desert and start continue walking this cancer journey with hope and faith.  The first question I get asked after someone learns that my family and I just moved here from the Dallas area is, "Why would you come here?" as if here is the worst thing that anyone could possibly endure.  I am loving the smaller, simpler life. There are plenty of ups and downs, but that happens anywhere you go.  Life is never perfect.  Truthfully, I don't know all of the reasons why we felt we needed to move here, but I know it was an answer to prayers. We have moved more than the average family, but we have learned much from each of these adventures.  The best advice and example from a dear friend was to "Bloom where you're planted."  No matter where you are or what your circumstances may be, put on a smile and start growing where you are.  Discover the area, get involved, be nice, and look on the bright side.  It will be amazing how life can thrive.

P.S. Any ideas on names for this gal?