Update 7/1

Hello and Happy July, everyone!

Today I had a round of tests done that will determine whether I get into the drug trial or not.  At 2 pm I had blood work – I arrived @ 1:47 pm, was in the chair by 1:55 pm, and was on my way to my next appointment (EKG) by 2:20 pm.  Arrived at a different clinic @ 2:25 pm, filled out paperwork, and was in the process of my EKG by 2:35 pm (appointment was for 2:30 pm – sweet!).  Then, off to the hospital for my ECHO (which I mistakenly called an ECG last week) – appointment for 3:45, but I was in there and done by 3:30 pm.  WOW!  Talk about efficient medical personnel today!  I was astounded!

Sadly, there was not a printer hooked up to the ultrasound machine, so I was unable to get a picture (that I had promised to Julia) of my heart – I will be showing her an ultrasound picture of a heart online tonight instead. 

Originally I was set to have my next appointment for this coming Friday with Dr. B, but I realized over the weekend that meant I was starting the DRUG on Friday, and that freaked me out a bit.  I am scheduled to go to Huntsville for work next week to spend a few solid days with my team focused on some good stuff (they are mainly located there and I am here), and I didn’t want to miss that due to potential side effects. 

Side note: YES, I am concerned about my health.  YES, I want to get better and I want the CML to be eradicated.  However, I have obligations to my work and more importantly to my family, and part of my obligations to my family include me working and having a job.  Therefore, I believe that it is important to ensure that all facets of my life are “covered” before I begin this drug journey.

So, I called Karen, the research nurse, and asked her what the downside of starting the drug a week later would be.  She talked with Dr. B, and they both agreed that another week of waiting wouldn’t be a severe issue, and so I am taking the trek next week, going in for another round of blood work on the 11th, and going back on the 16th (EEK) to start the medication.

On the 16th I will either immediately start on the trial and either receive imatinib or ponatinib OR I will simply start on imatinib (Gleevec).  Karen and Dr. B are certain I will be accepted into the trial, but in the event not, then I would head to a pharmacy and pick up Gleevec.  Drugs, either way.

My next “head game” is gearing myself up for the potential side effects.  I learned last Friday that the most common are edema (swelling), nausea, high blood pressure, low blood cell count, rashes, fatigue, and joint pain.  Fun!  (There’s a drug for that.  Ha!)  I have no idea if I’ll have any or some or all or worse ones… so really, just praying and hoping for the best right now.

I’m reading The Philadelphia Chromosome by Jessica Wapner right now – SUPER FASCINATING!  If you want to learn about the history of blood cancers, and specifically CML, and can stand a bit of science and medical speak, definitely check it out.  No joke – I have Teenage Mutant Ninja White Blood Cells.  (They are ninjas and instead of kicking butt and fighting infection, they eat pizza all day.)

erin