9: Radiation Countdown + Doctor Day (Jenkins)

Day 2 of brain radiation.  

The only side effect after day one has been blurred vision.

  

The mask and machine worked wonderfully today--no problems and seemed to finish in a flash.  

I learned that Wednesday is Doctor Day!

I also learned another negative about being a satellite clinic: you never know which doctor you are going to see.  Today I met: Dr. Jenkins, and he met me. His nurse asked a ton of 1st appointment-like questions.

What meds are you taking?

What major surgeries have you had?

Are you pregnant?

Have you had chemo in the past?

At that point, I stopped her.  Really? I've been fighting this beast since 2013.  Aren't the answers to these questions in the system?  She apologized, explaining that she is required to ask all these questions before I met Dr. Jenkins.  

I asked the doctor today if that was normal.

"Not really," he responded, "but different people often have different side effects."He explained that it all depends on the part of the brain that has radiation.  My eyes might be in a bit of the range.of said radiation.    

Was I having pain, headaches, or fatigue? 

No more than from my daily I joked.   (Doesn't every parent of children in multiple schools and multiple activities feel fatigued on the daily?)

Luckily, after a good night's rest, the blurriness cleared up.  

Here's hoping it will continue to go this well!

Baby steps to the end of the countdown!

 

10: Brain Radiation #1

Today was the day!  

We had liftoff. 

I started whole brain radiation for the 2nd time.  

I'm feeling well, so far, and just want to get this countdown done.  

Today went even better than the simulation from yesterday because yesterday the techs were a bit off on the mask.  I mentioned that it was quite tight around my neck, like I was trace amount choking.  It felt different than when the mask was first made, and I didn't know if I could breath well enough to hold still for the treatments with those conditions.  

Thankfully, we adjusted a few things, ever-so-slightly, for today, and the whole thing was over and done with in no time! 

 

I am grateful to be in caring hands and have caring hearts and prayers for me and my family from all over the country and even into many parts of the world.  

Those things, along with many more tender mercies, help me get through this thing, one foot in front of the other.  

Until tomorrow!  

 

Brain Radiation Simulation

I was told this would begin August 22nd.

That was wrong.

I was told we would begin on August 29th.  

That was closer to the truth.  

(My new mask.  I shall call her Eedolem.)

Instead of starting the first of ten radiation sessions on my infected and invaded brain, today was merely a simulation.  I asked, "WHY?!" and Jeff and Brandon told me that this was one of the negatives about being a satellite clinic with no in house Radiologists 24/7.  

The techs make the mask.  

Then, the patient is sent through the MRI with the mask on.

Next, those results are sent to the mother ship.

When the satellite station receives word that it is go time, the techs use the mask and MRI results to make final plans for the radiation machine.  

The patient is masked up and locked in and the exact markings for radiation location are made.  

Those exact markings must be signed off by radiology at the main hub.

After all systems are go, the patient begins the radiation journey.  

My scheduled launch is set for tomorrow.  

Let's hope the computer has the evidence. No need to abort.  

The countdown for tomorrow starts.....

I'll be back tomorrow and the next day and eventually for ten days to fulfill the mission.  

 

Birthday Eve Chemo...Enhertu #23

Evan on my birthday eve, I had to celebrate!  This was the closest day to the big day that I was at the Cancer Center, so that was when they got to celebrate with me! I'm so glad my friend, D, was able to come along......or rather, I was able to come along with her!

I came prepared with my tiara, my Birthday Queen shirt, and my jeweled jeans and shoes.  It was a fun day! 

Liver enzymes came back high, but not so high that I could not receive the infusion.  

Soon, it was time to walk on out of there and head to lunch! 

The birthday celebrations did not end there!  

On my actual #43, Dana took me to an actual birthday lunch, where she talked me down from a meltdown by declaring that only happy, joyous thoughts would be shared.  Sometimes the birthday queen needs to take advise from her ladies in wait.  

We ate and did some home game shopping.  

My downer birthday week was on the up and up!  

(And cancer got another kick to the curb.)

 

Zometa#19 + Radiation Setup

 

Today I was scheduled for my brain radiation mask, but it was also time for my bone-strengthening infusion, Zometa.  I'm so grateful that the clinic schedulers are starting to get me and put both of these on the same day.  

While waiting for the short infusion of Zometa, I realized that I had never numbered the times I received the bone repair in my cancer journal.  I usually keep records of that, especially after recording the number of Herceptin doses in order to prove the company wrong and avoid one extra infusion back in 2014.  If I hadn't kept good notes, my oncologist would not have done a double check.  She would have trusted the drug company over a patient's memory.  She would have been wrong.  

With the importance of proper records in mind, I counted the amount of Zometa infusions while I waited.  It surprised me that the number wasn't higher, but I will be better at records from now on.  

Then, I waited for the rad techs (Jeff and Brandon) and worked on a puzzle.

I got fitted for a mask.  I don't remember that wet mesh being so hot when they molded it to my face.  I was seated on the machine to scan for the proper placement for the actual radiation.  I loved the sky decor, which reminded me of the stars in the night sky.  

I feel like I'm on the right path.  

As of now, I'm scheduled to begin the radiation process on Monday, but will receive the call to confirm.  If it's not on Friday, the radiation won't be Monday. 

After 2 weeks of short, daily doses, 

I'll go to Lubbock for scans and something to check if cancer has gone into my spine.

   

Let's get it on.

I'm ready to fight and know that I am in good hands.  

Here Comes the Sun

 

It rained today, and we needed it.  

I was reminded of our time in Miami, when my oldest baby and I would play in pouring rain, and be unafraid to run with a full cart to car, the only ones to leave the safer cover of a store overhang. 

 I love the sounds and smells of rain and the cleansing feeling of a good, refreshing, safe storm.  

Usually here we get 12 seconds of sprinkles and that's it.  (Plus dirt = dried mud and spotted cars.)

Stephen and I were supposed to have gone to this appointment together.  Then, he got called into work ten minutes before we were set to leave.  He was hoping he could do this case and meet me.  I was pretty sure he would find a way. 

I left a bit late on purpose to give Stephen more time.  I needed him at this one for the good vibes, but also to help with remembering the questions to ask and to navigate the options presented.  Stephen was there for my first venture into brain cancer treatment, both in the doctor's appointment prior to, and at home with the symptoms and seeming triumph.  He remembers better than I do how I (and my body) reacted. 

There are days I don't recall, when my brain tapped out and I slept in a hospital, not in a coma, but unable to communicate, either.   I remember vague, dream-like mirages from before and after those days, but Stephen was there and spoke with medical professionals on my behalf.  I believe my brain was sheltering itself, covering the chaos while I healed a bit more.  Perhaps some miracles take extra time.

After those scary days and weeks for doctors and family, I was mostly back to normal.  Not quite as fast and no longer genius level, but close enough for horseshoes and hand grenades.  

I met with the nurse, and let her know to inform the doctor that he could hold off a bit on seeing me, as my husband was on his way.  Sometimes, there are things that just can wait.  

Dr. Sun spoke about researching options-gamma knife, whole brain radiation, and a few other things.  He counseled with colleagues at home and MDAnderson, Baylor, utSouthwestern, and more.  Being a young doctor, he, personally, has never done a 2nd fun brain radiation on a patient, so he did was he had been taught to do-reach out to others, ask questions, research the work of others, and move forward with a plethora of information.  

It was probably a good thing that we had a vacation planned, to give Sun a chance to have the time to do all this work. He presented us with the results.  In his opinion, moving forward with the whole brain radiation was the best option.  It has been quite a long time since my first one.  We caught these pretty early, so that is hopeful for success.  

A lower [60-70% of original] dose this time and steroids only if truly needed.  

a medicine to try to help prevent more memory loss. 

Still 10 sessions of radiation, M-F for 2 weeks.  

Still need that lovely head mask, and will be fitted for it next week. 

With all that and a bad of insurance's blessing, I'll be good to start the week after next.  

With all that, it was time to get on the road again.  Today, that road just led to a healing lunch of Mexican food and Dr. Pepper.  It was long, long road for me, trying to pick up a police report from the weeks-ago accident and then finding out it hadn't been updated.  And then finding out that the restaurant was out of Dr. Pepper.  The food and company were still lovely, plus Hobbs DOES have other places in which to procure a Pepper.  

Next week, I'll put on some better shoes for kicking butt.  

Thank goodness for friends who can drive by a girl's house with a fresh Sonic DP.  

I'm ready to fight! 

 

Enhertu # 22 + Tafur

I'm back from a great road trip and ready to move forward.  

Let's keep on with keeping the body strong and find out about how to fix the brain.  

Amazingly, my BP is low and other vitals are normal.  No Wuhan. 

However, I'm tired.  

Picked up a few snacks, so I didn't have to wear my mask the whole time and realized that I forgot to put my headphones back in my purse after the road trip.  Instead of being able to zone out, I had to listen to two personal tv stations, on high volume, a couple of phone calls on speaker, and a patient visiting wife all hyped up on coffee and in a long and loud chatty kind of mood for today.  

Baby steps to Enhertu.

Baby steps to Enhertu.

 

In and out and onto lunch with Stephen!

Baby steps to lunch!

Baby steps to lunch!

Please, let no one collide with this rental car!!!

Baby steps to tomorrow, and the next day, and many more after that.  

 

Another day; another doctor.

Didn't have to wait so long for this appointment.

Dr. Tafur's demeanor was different than our meeting before my trip.  

He seemed more solemn, more restrained, perhaps. 

Instead of positive vibes on how to treat my brain tumors,

he deferred all brain tumors related thoughts to Sun.  

I asked questions about more info and other opinions and how to proceed.

"You'll have to wait to meet with Dr. Sun," he replied.

It felt like the positive, optimistic attitude from my oncologist two weeks prior had been replaced by a terminator.

He was less than-excited and did not seem at all interested in my questions or reports of locating a few trials, as he had counseled me to do.  

"Talk to Sun.  I take care of treating your body.  He is over the brain."

What happened in two weeks, I thought. Did these doctors have a come-apart?

Should I be worried?

I had woken up early, dressed, and drove for an appointment that checked that I gained a few pounds on the road, that my heart was still ticking, my blood pressure was still low, and that I had not come into contact with Covid and remained system-free.  

That, and how was my trip.  

I could have done that without having to pay for an oncologist visit and would've been just fine.  

Maybe better.  

These downer days have me wondering and little more on the 'why.'

I hope that the Son will be with me a little more until I see the Sun.