MRI of Brain

Before school got out for summer, I had an appointment for a follow-up MRI.  

The morning-of, a nurse called to inform me that the MRI machine was down, and I would need to reschedule. The "first opening" wasn't until three weeks later, I was told.  When that didn't work out, I was going to have to wait until July.  Thankfully, since this scan needed to be completed before I met with Dr. Wardack again, suddenly a few dates + times opened up.  The best one for me was for today.  

It being a Saturday, I was concerned we might have an I.V. situation.  Thankfully, Janelle was in house.  Her 40+ years of experience (in ICU among other areas) gave her no concerns whatsoever about my "weird" port.  She felt for it and was completely confident and even has experience with the weird and "impossible-to-access" thing.  THANK YOU, GOD, for this woman!  

After the port was accessed, it was all smooth sailing.  

I had an awesome rad tech, Anthony,  who I thanked for helping me out with my ELSMRI *emergency life-saving MRI* on a Saturday.  He got me set up and gave me super simple instructions: 

"Just lie here, completely still for 28.5 minutes, in this inclosed noise-making machine and totally press that call button if you need anything at all.  BUT DON'T MOVE!

See you in 30!"

I fell asleep and jolted awake when Anthony came back in.  I had dreamed that the noises of the machine were really a car alarm, signaling a break in and theft.  

Nope.  Just contrast meds being administered through my port.  

Another ten minutes, and it was time to go home!  

I meet with Dr. W next week.  

Hoping for good news.  

Plus, I know no matter what, it will all be okay.  

Herceptin #56 + Labs + Coolio

I received a letter from BCBS in the last three weeks, explaining that they received my appeal to cover Perjeta.  Another letter came, explaining that the appeal had been handed over to XYZ oncologist with blah-blah-blah credentials, who had determined that it was medically necessary to my case and should be covered.  HOORAY!  What a quick turnaround to a positive answer on that depressing and saddening news from my last appointment!  

Today was a new day and I was completely prepared to talk about more miracles in this journey brought about by the power of faith and hope and prayer.  After having labs drawn--by accessing my port!---I had even more reason to rejoice.  Then, I met with Dr. Cole, who talked about how she hadn't heard whether the insurance would be covering Perjeta, but that didn't worry her.  If we needed to just continue without it, my cancer has been "so quiet" that not having perjeta at this time doesn't give her cause for concern.  

I tried to show her the letter of coverage that I received, but all the insurance papers were mined together in my bag.  I couldn't locate the correct information!  

I asked the financial person in her office to help.  "What responses has Dr. Cole received on my appeal process for Perjeta?"

The only one she could find was from a a claim from DECEMBER 2018, where the insurance eventually covered the drug at 100%.  But, that was it.  There were no claims from the last 6 months of treatment.  How was I to know that BCBS would be paying for all of those----or for every three weeks for the rest of my life?  There was no response or record of the letter out of my mailbox....and I was starting to wonder if I had imagined it.  

I called the insurance.  There were NO CLAIMS on record for any other dates of service that included Perjeta.  WHAT???!!!! 😡.  From the first appointment in DFW, I brought proof of my Perjeta drug assistance program.  In College Station, a claim was made for the drug.  The insurance accepted or denied.  Appeals were made until it was eventually accepted.  The insurance sent a bill for my portion of the cost, which was high until my deductible and out-of-pocket were met.   The balance information was sent to the drug assistance program, who sent a check to the clinic until my deductible was met. Bada-bing, bada-boom.  No such luck here.  

I'm on the phone with insurance, trying to explain that Perjeta is not just a "claim" for me.  It's great that they covered 100% of what was owed in December, but that doesn't ease the anxiety. "I am currently at my cancer clinic, trying to decide if I will be able to continue with my treatment plan which includes an infusion of this drug every three weeks for the foreseeable future."  This customer service person, bless her heart, couldn't give me a simple, straight answer.  She didn't know.  The financial person at the clinic couldn't give me a simple, straight answer.  I was caught in a loop between insurance and billing and NO ONE COULD TELL ME HOW TO PROCEED (and not be suffocated under hundreds of thousands in bills from the cost of what wasn't covered by BCBS!!!!!!). The other frustrating this is that this big company (UT Southwestern) doesn't work like my CS Cancer Clinic.  It's on a much bigger scale, and they only bill monthly.  There is no individual or personalized billing.  No one is in house to truly answer questions.  No one is here to go to bat for me and call the insurance to fight.  I am a one-woman army against the world.  

It got to the point where I needed to make a decision for today.  No Perjeta.  And, no more wig, as it was too tight and too itchy when I was trapped in a wormhole and starting to tear. up in frustration.  

Wig off.  Decision for today made.  Would have to try to fight this battle another day.  

I took a moment to feel sorry for myself.  

"It's not like I don't have anything else going on!  Can it not be enough to just battle cancer?  Is it not painful enough to endure the side effects of drugs and infusions and the stress of ACTUALLY fighting cancer????  What about the financial stress of the whole thing?  Plus, there's the regular ups and downs of being human + trying to navigate life while keeping my little humans fed + clean + safe + alive.  Can I not just find someone who can give me A SIMPLE, STRAIGHT ANSWER ON THIS?????

And then an answer to prayer came.  

"It will be okay.  

You may not know how now, but it will be okay.  

Dr. Cole isn't worried about going forward without Perjeta.

  If you are able to work it out, that's just a bonus. 

It will be okay."

With that, I put away the stack of papers I was trying to navigate to locate the insurance company's decision to cover my drugs.  I asked for something to eat and drink and bundled up in my blanket, trying to relax and allow my BP to return to normal.  

I don't know how, but it will all be okay.  

I can keep on with my goal to BEAT(kick) THE HELL OUTTA cancer. 

To document:

This itchy rash, which two dermatoligts + two primary care physicians + two oncologists + various nurses/CRNAs/family/friends have not been able to truly diagnose or treat has been ramping up since my last treatment.  This means lots of burning pain and itching.  It also means wearing bras as little as possible.  Maybe it's not all that bad.  

I keep telling myself it's my body's way of eliminating the bad stuff from chemo drugs.  

It's not serious enough to stop those, so I just suck it up and keep going.    

H+P #55, Minus Perjeta, Add Zometa

It's a rainy, dreary day, but the grass is green and the trees are looking full and beautiful outside.  I had an earlier-than-usual appointment today, and getting up and going quickly so early caused the new normal nausea.  Thank goodness for Zofran!!!

My mom and sister and namesake niece are in town, which is great.  Staying up til 2:30 helping  slowing down my sister on a barstool recovering project might have also contributed to the sickly morning, but the ab workout from the laughter makes up for it!  (Mom drove me to chemo to check out my new stomping grounds! *No photo of late night antics with sister.  Just trust me, though--we are hilarious and talented and amazing at DIY projects after midnight!)

I received a letter yesterday from my insurance company informing me that they were declining the P of my H+P regimen.  According to their information, Perjeta is not medically necessary in my case.  

"There is not documentation that this medication is being used with another medication called docetaxel.  It is therefor not medically necessary per Heath Care Service Corporation medical policy RX502.034."  

I've got news for you, Ms. RX502.034.  I can give you documentation of the necessity of this drug. I have pages and pages of medical records showing that I have been taking perjeta to treat Her2 positive metastatic breast cancer, with successful results.  I also have documentation that my survival rate is LOW, LOW, low,  but, my health care professionals believe H + P = staying alive in my case.  Against all odds of surviving stage IV cancer, I have continued to receive perjeta to fight this demon disease.  And, guess what?     

I'M STILL HERE.  

Perhaps my story doesn't provide enough data for your big, bad, insurance company to pay attention to, but but it's enough documentation for me to keep fighting for my own care.   

I know I have Pink Warriors on my side. 

*one of my sweet nurses, Tessa, has been waiting for me for weeks.  She's been telling the new nurse all about me and couldn't wait to surprise me with two more wigs to add to my collection.

"They are colorful and someone donated them, but not everyone would wear them.  I immediately thought of you!"

So, Ms. RX502.034, quit being a jerk and give me a fighting chance.  

But, if not, I will continue to kick cancer's butt.  

I have people counting on me.  

H&P #54 + Appt with Dr. Coolio

After feeling sickly on the car ride up to chemo three weeks ago, I decided it was important for me to pack a barf bag in my purse in case of possible future vomit emergencies.  

Who knew I needed to take one with me to the bathroom?

I discovered for myself the necessity of carrying this disposable medical provision on my person at all times.  This morning, I threw up Dr. Pepper-coated cream cheese and bagel chunks all over myself while I was in the bathtub.  

It was the first school day in our new house, and I was making sure the boys all had bikes and a way to get back in the house after school in case I was still at chemo.  I also was up and out of bed and on the move early in order to get to my appointment on time.  I should not have been doing so much all over the house so soon after waking.  I know my body better than that.  Walking back and forth and up and down stairs, plus eating breakfast before 9:00 is not the best choice for me.

  

I got the kids to school--everyone fed and dressed and brushed and tooth-brushed and socked and shoed and snack-packed and backpacked and helmeted.  We discussed the new bike path to school and checked keys for re-entry.  Having survived the morning, it was now my turn to get going.  

I grabbed a bagel and realized that three bags of frozen fruit had been left on the counter all night.  They missed the trip to the freezer, being hidden behind one of the many moving boxes.  Luckily, they could make it this morning.  I moved quickly to get them to their destination.   Strawberries and peaches? Check.  Blueberries?  Would have been safe and sound next to their counterparts except for two holes in the bottom of the bag.  As I moved them toward the freezer, thawed blueberry juice spilled all over my new kitchen!  Rugs, countertops, wood flooring, cabinet doors, and even one pink slipper were all caught in the crossfire.  

This mess could not wait.  I had no idea what that juice would do to any of those surfaces, but I have read the message of caution on those boxes of store made blueberry muffin mix about blueberries staining.  I had to get to work before any possible stains set in.  What I thought would have been plenty of time before my own departure was then shortened by 20 minutes of cleaning.  

I still had to bathe, shave my legs--which is why I chose bath vs. shower--eat breakfast, plus dressing and makeup-ing.  I was just at that moment of perfect water temperature and height level when I felt the nausea coming on.  Soon after, I felt like the outcome was definitely going to be food coming out the in pipe.  There was no escaping it.  Between all the chemo and pregnancy vomit, I know myself.  Some nausea can be fought with deep, calming breaths or medicine.   In some instances, that food and acid is finding an exit point, no matter what I do.  This time, it was going to be the latter.  

I had two options:  1) jumping out of that already-shortened soak time and sprinting staggering toward the WC or 2) just letting it happen head-on into that beautiful, bath-bombed water.  Option one would take time, as I maneuvered my broken body over the tub wall, grabbed a towel, and attempted not to slip on any wet tile, all the while hoping I would actually make it to the toilet safely.  Option two?  Gross, plus another bath.  Well, as fate would have it, my decision for me.  I'm actually glad Mother Nature chose her own bath bomb, as draining and cleaning a tub was much easier than what I would have faced otherwise.  

Another 15 minutes of cleaning and re-cleaning and re-cleaning ME, and I knew I was going to be late.  But, I was bathed and MOSTLY ready.  Then, I couldn't find a bra, which had been in a dresser being used in one of the boys' rooms.  A trip upstairs and a quick search, and I was ready.  Then, I couldn't find my backpack, the one with all my treatment supplies + computer.  I even remembered as we were moving into our new house to put it in a "safe spot," one where I would be sure to spot it before chemo.   A few minutes later, we were off, and only ended up being five minutes late.  

I had time to breath and laugh on the way here and my blood pressure stayed just fine.  (101/72). I even lost a few pounds from all that stepping and stair-climbing over the weekend's move.  You would think I've dealt with this kind of thing a time or two!  

And, I still made it here (mostly) on time, complete with pink wig and a smile, ready to BTHOC!  Even the nurses noticed the turnaround.  "The real you is here!"  

When hard times come, and they will, remember that you can get through them.  Like that old saying goes, "Blueberry juice + bagel vomit happens."  Or something like that.  

Keep on kickin' and beatin' that cancer.  

H&P #53 + Dr. Coolio

Last Tuesday, I showed up for my regularly scheduled chemo + doctor appointment.  

I received the good news that my bone scan results showed no new growth and nothing to worry about for now!  

I received the bad news that somewhere along the scheduling line someone skipped a week and I couldn't have my chemo.  

Here I am, a week and a day later, here for treatment.  I am also quite nauseous and off my game today.  One of the nurses even asked me where the "normal Cooper" is.  Maybe you need your wig and tutu, she suggested.   Nope.  Just Zofran.  

New shoes, a surprise from Stephen will help, too!

I've been pondering on my brain troubles lately.  As cancer tries to keep creeping into my cranium, I become even more aware of what an asset this brain of mine has been.  One of my great talents used to be intelligence and the ability to remember and recall information.  I have always been grateful for being blessed with those abilities and being able to use them to teach others.  

These days, I realize that it's a good thing that I used to be smart.  Radiation on my brain has taken its toll and knocked me down several points on the IQ scale.  I'm glad I had a few points to lose.  It is quite frustrating to have lost so much of what used to come naturally-memorized information, facts, words themselves.  Thankfully, my kids still know it's hard to get one past Mommy, which might not last too many years longer.  

 I was blessed by God with a keen and alert mind for most of my life.  Who knew that I would need extra in this area to be able to keep up as cancer tries to take over? Maybe God knew that I would need an excess of brain power early on in order to continue to be able to grasp some sense of intelligence now that my brain has been fried.  I had some smarts to spare, and I still have a sense of humor in this whole thing!   

H&P 52 + Blood Work

Chemo the day after brain radiation.  I'm pooped!  The wig didn't stay on long after the photos, thanks to a massive headache.  

However, the smile stayed---I have a fun visitor!!!  

And, spring is in the air!  

Happy Spring + another chemo down!  

Gamma Knife

Yesterday was a LONG day.  

My friend cheerfully offered to drive me downtown, with an arrival time of 6:45am.

I was quickly called in for my MRI.  {They take one the morning of treatment, to confirm the location for radiation.}

Before the scan, I got to change into the lovely paper scrubs.  I laughed because the last time I wore these, the hospital only had XXL.  M is a much better fit.  Also, last week marked my FOURTH FIRST pony tail!!!  {All the times I've had to grow out my hair enough to make a tiny ponytail.  Too bad I had to take it out for the rest of the day into order to have an accurate scan and radiation.}

I had the MRI.  Then, they made me a new mask.  The first time, it felt like paper mâché.  This time, the mask was put into what I like to call a medical toaster oven, heated up until it began to melt, then placed over my face and molded to my features.  Then, they did a quick CT with the mask on, to map out with the MRI for even more precision.  

Then, I waited my turn.  All the other patients there for treatment went with the Frankenstein metal bars screwed into their heads.  They all looked out of it and drugged.  I'm glad I chose the mask.  

I waited and waited, but I had a room and a bed and a tv.  The Price is Right was one.  

I also snacked on cranberry juice and pretzels.  

Then, it was time to begin.  The mask was SOOOOO tight, tighter than when it was molded.  I felt like I was being suffocated.  I couldn't move my lips to speak, so I gave a thumbs up or down to the questions. I could open one eye, which I forced myself to keep open, looking at the blue sky ceiling tiles and talking to myself to keep me awake.  Still and awake---that's what I promised.  However, I was now told that instead of 30 minutes, it would take 48 minutes.  I was up for the challenge.

I keep singing Adele songs that I requested in the background and giving myself pep talks on not moving and staying awake.

Much sooner that I thought, I was being unlocked!  The nurse said that it didn't take 48 minutes because I did so well and they never had to wake me up or readjust me!

I was taken back to my room and Dr. Wardak stopped in.
I told him "I promised you I wouldn't move or fall asleep, and I kept my promise!"
He responded, "You did.  You did great.  We didn't have to stop the procedure and readjust you at all. I'm really happy with how it went.  I think we got those two spots.  I'll just see you again in 3 months!"

I felt like a model patient, keep my word on not moving or falling asleep.  And, for any of you who know about me + sleep, it was a HUGE task to accomplish!

They wouldn't take a photo while I was strapped in, but I got to keep the mask.  You can see how tight it was, so much that it left the waffle print on my face!

No worrying about my brain for another three months!