Thursday, February 10, 2022

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.  




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